I started my treatment for Lyme about 6 weeks ago. I'm seeing Dr. E in NJ. The first month I went on Cefzil and saw no results--just the gradual worsening that occured with no meds before diagnosis. No improvement, no herx.

At my one month checkup, I switched to a combo of amoxicillin and zithromax.
It's two weeks into this treatment and I still don't have ANY change--no better, no worse.

I'm getting really discouraged, as well as frightened. I know everyone's chemistry is different and lyme/medications affect each person differently...and that there's dozens of medications I haven't tried yet. But it's just so discouraging! I haven't even had a little bit of relief yet. Maybe I'm just too impatient?

I'm also worried that one of the next steps if oral antibiotics won't work is IV. This scares the living daylights out of me. I'm not afraid of needles, but I can't stand planning my life around treatment (or more specifically, giving up things I enjoy because of being ill).

I'm not quite sure what I'm asking...perhaps just what has worked for you..? How many tries did it take to find something that works?

Sometimes I'm not even sure how to tell if I'm getting better, I've been sick so long and it's come on so gradually over the years. Judging by medical history (and my dog's Lyme), I've probably had it since I was 9 or 10 and I've just turned 19.

I'm just waiting for my light at the end of the tunnel, and popping pills to no avail feels so hopeless.

I'm also worried that one of the next steps if oral antibiotics won't work is IV. This scares the living daylights out of me. I'm not afraid of needles, but I can't stand planning my life around treatment (or more specifically, giving up things I enjoy because of being ill).

Ag-
I have lyme encephalitis/nuerolyme. I've apprently had it abt 30 yrs. I just got a real dx and started treatment 6 wks ago.
I started with doxy for 3 wks until seeing llmd, then switched to zith iv.

I'm seeing gradual but marked improvement as long as I watch my diet, rest and stress. The improvement is awesome! It's really allowing me to have some fun again, which I will gladly take on even occasionally.

If you haven't heard, Lyme likes to intensify our "weakest link" . So if someone had depression or anxiety issues, or joint or digestive issues, the cute little keets would move into the anatomical areas of the body that most effect those issues and go to town.

I share that reminder, cuz sometimes it takes a while for enough concentration of abx in a target area, and a noticable decrease in symptoms.

For me, the iv zith has helped to much. I didn't want iv either, or the disruption in my life, but what a gift it has turned out to be.
I hope this is making sense. there was something more I wanted to say, but blissful exhaustion is setting in, and I need some healing sleep.

Watch out for little signs of improvement. It may be 2steps forward and 1 back for a while, then rest more, and give yourself the gift of healing.
I wish you well

But it is better now. This whole week has been better than I have been in many years. Some people are lucky to see immediate improvement, and others have to wait much longer.

You are still early in treatment. I never see any real change from my meds till I have been on them at least six weeks. Maybe you need to be a little more patient, gives things time to work. It takes six weeks to even be sure you have covered one reproductive cycle of the bacteria.

Time to remember that this isn't a race. Yes, it sucks to feel miserable 24/7, but 6 weeks is not much treatment time at all, especially if you've had it a long time.

I didn't see any kind of light until after 3 months of treatment. Are you keeping a symptom journal? Keeping track of your food and water intake?

Sometimes, the improvements are so tiny that unless you write down all the scary stuff that is going on, you don't really even appreciate the teeny tiny improvements until you read your symptom journal.

You've just been switched to a new protocol, so give it time before you say it's not working. IV is not the next step, especially not with the LLMD you are seeing.

People do get better - and I'm proof of that. Vent when you need to - we're always here!!

Patience isn't one of my best virtues. But I realized quickly that if I've had this bug in my for so many years (18 now) that it will take a while to get rid of it.

I started treatment in March. I didn't notice any improvement until October. And, even with improvement, I still need to be on muscle relaxers and plaquenil to prevent dibilitating pain. It just takes time.

I think symptoms worsened for me about 2 months into abx. They stayed worsened until the improvement in October. It's not a fun process at all.

Are you on anything to help reduce symptoms? My pain management has been crucial to my emotional and physical well being during these months.

achey --
Thank you for the encouragement, I'll try to take the small victories when I can and keep my eye out for them.

riversinger --
Okay...time to buck up and look for that inner patience...*concentrate*

lymeinhell --
I do keep a rough journal, but its rather generalized. I should try to note the daily experiences I go through so maybe I can see those small improvements of which you speak.
I take it you're familiar with Dr. E? So she's not one to jump to IV until absolutely necessary, then? That'd be a huge relief to know!

Aniek --
I've wondered about pain management. I'm just so worried about mixing medications or anything. My only remedies for pain are a heating pad and some nutritional "natural pain killers (tryptophan and bromelain)--which don't seem to be doing anything for me :/ Should I ask at my next visit about pain management?

Flexeril at bedtime was a godsend for me, along with a Glucosamine MSM Arnica lotion that I use on my neck and shoulders (and anywhere else needed).

Depending on where your pain is, this could be helpful for you.

Patience, hot showers, venting all help too.
The good days will come...

caat--
No, can't be relapsing, because it never went away first :/

I have read a lot about peppermint oil in posts here, and the other day at the mall my mother and I were wandering around Origins in Macys and I tried a sample of this vapor lotion with essential oils (including peppermint). You inhale the vapors and rub the lotion on your neck and/or shoulders. It heats up and tingles--sort of a momentary thing. It comes in a little bottle that fits easily in my purse...I wonder if this is similar to anything anyone else is using?

I've also found baths in lavendar and rose mary to be at the very least quite relaxing...but of course these things only work in the moment.

Lymeinhell you mentioned flexeril? What type of medication is it? What have others tried that work for their pain? (for me the main issues are joint pain, headaches, and muscle soreness/stiffness...most recently a lot of eye pain and ocular headaches)

Thanks again, and continually!
ag

I resisted pain control for a long time, not wanting to add more meds. However, once I finally gave in, my improvement has accelerated. I'm sleeping better, and more able to handle just daily life.

Best to talk to your doctor about what to use. It depends on the cause of your pain what will be most helpful. Muscle relaxants, low dose antidepressants, drugs for neuro pain, antiinflammatories, opiods all have their uses, when used properly.

Pain relief also makes it much easier to have patience with your treatment. And of course you can cal the doctor in between appts! The doc should know when things are this tough.

Flexeril is a muscle relaxant, which helps relax you and often relieves the joint pain and helps you sleep (at least at first, it knocks you out. you build up a tolerance to it). And if you get it, specify to your pharmacy 'No Generic!!' It's like night and day.

I couldn't believe the difference after taking the generic for 2 mos, I ran out early and my LLMD phoned in a refill. But she made sure it was non-generic. My muscle lumps (spazms) in my shoulders literally disappeared in a week!!

Peppermint Oil is indeed soothing. Good for headaches. However, peppermint has many other benefits. It also is good for upset stomachs (by ingesting in a liquid). And if you use it in combination on your sking with other healing oils and use peppermint last, the peppermint draws into your skin whatever is underneath it.

That said - QUALITY counts. Some oils are not meant to be ingested OR put on the skin. Although they may lead you to believe otherwise. Go to www.youngliving.com for the purest oils out there. (and no, I'm not selling anything)

Make that call, and hope you feel better soon!!

The thing about flexeril is it works on very specific pain- overworked or tense stressed muscles and sprains. So- it won't won't work for all pains all the time.

I use darvocet occasionally. It's a lower level narcotic and a pretty straightforward drug. Not terribly complex I don't think. Doesn't interact with as many things as flexerile probley. It's not good all the time- you get used to it and then it's not effective anymore... and it's additive. But if your only using heating pads etc, a day or 2 of releif with a pain pill will do wonders and help you heal.