I had an MRI when I started treatment in March. 04, and it showed a lesion of unspecified origin in that area.

I've gone for 2 sessions of Micro Current Therapy to relieve the pain and pressure. It has to some degree, but the pain persists. And now my blood pressure has been creeping up into not good levels, despite being on a beta blocker. (Which came first, the high bp or the pain... not sure).

I've had to increase Toprol from 50mg to 100mg a day just to stay in the safe limits.

My biggest fear is that this is not lyme related, and that something far worse (yes, there are worse things) is going on up there. The pressure at times is so great I am nauseous, and the only relief I get is from Advil, herbal anti-inflammatories, ice packs, or remaining horizontal.

My LLMD wants me to go back on Rifampin. I am going in a little while to request another MRI or other tests to rule out scary stuff.

Is there anything I could possibly do to avoid going back on abx (but relieve the pain, and not let this get any worse?) Cranial pain (and dizziness) was one of my first and worst symptoms. So far, nothing else seems to have come back.

This soooooo sucks because I have been living quite the normal life since the beginning of the year.

If antibiotics will keep my symptoms under control, I will take them as long as I have to. Forever, if necessary. Ten years of increasingly worse symptoms, with no clue as to how to stop them, has convinced me that there are worse things than a lifetime of antibiotics.

Now, that is only useful if they actually do some good, and the side effects are not too bad. But I've been watching folks for a while, and for some, it looks like keeping things under control might be more successful than trying to go off, and then have to play catch up.

It's just something to think about. I've learned a lot about it as Li've learned how to control my pain. I used to try to tough it out, only take my pain meds once things got bad. Now I've learned that it works much better to stay ahead of the pain, to anticipate it, and take meds BEFORE I need them.

I suspect it may be the same with these infections. If we can stay ahead of them, instead of waiting till they are bad, it may go easier with us, and in the long run we may need less treatment overall.

Whatever you end up needing to do, I hope that you get some relief soon. It's somehow scarier to me when it has to do with my head, guess I'm overidentified there. I hope you get some answers soon, and relief even sooner.

Had been to the e.r. many times in the past from the pressure, and thinking each time it was due to h.b.p.. I never had trouble with h.b.p. before my neuro. crap started!

I have been on lisiniprol for h.b.p. for a while now! The pressure did not always correlate with b.p.. My b.p. would get extremely high, even on b.p. meds..

My b.p. is fine now, but need to watch if it gets too low.

Years back, when I saw the first neuro.. He told me if it was m.s., that it would be low.

I found out from a friend of mine who's husband still has the same doctor for m.s. that he was also hospitalized with h.b.p. before seeing this neuro..

I think with lyme...it can go either way!
Mine got better with time and treatment.
Make sure it's from the lyme even though!

I didn't take anything for the pressure in my head, and thought at times my eardrums would explode!

Isn't this kinda like vasculitis? Inflammation of the blood vessels to the brain?

Hope this helps a little, and hope you feel better soon!

Do you know how long you've had lyme? Did you go off because you were symptom free for three months?

Sorry to hear about the relapse. I hope things work out well with the doc.

Turmeric and Ginger are good anti-inflammatory herbs that you can safely incorporate into your diet, and I think that extra vitamin c would help as well.

Let me know how things go.

And don't I feel like the horse's petuti...

And I now actually worship the ground my LLMD walks on. I loved her before - I idolize her now. She's the top dog in NJ, and I'm so lucky to be so close.(Despite having to 2 wait almost 2 hours to see her.)

My appointment was a little while after I posted this morning.

We went through the symptoms, and what led up to it... She then walks over to me with a new lotion I never heard of. And poked on the back of my head where I used to get horrific muscle spazms (and hence, horrible horrible head pain).

She pushes in with her knuckle, and says "Does this hurt?"

Holy crap!! I had no idea that it was so sore there. She says 'The head pain is referred pain. You've got the trigger points again. Even your arm muscles are twitching. Your blood pressure is also high, despite increased bp meds.'

She then says that she thinks that by waiting so long for my IM Magnesium shots, I was severely depleted, and suggests an IV Magnesium. My BP dropped from 138/92 to 128/80 after the IV, and my head pain is almost gone.The pain has now moved down to my shoulders on a much lesser scale.

I'll be learning how to give myself weekly IM Magnesium injections instead of waiting every 4 weeks. And I was shown how to accupressure the trigger points out of my head.

If my head still aches in 4 weeks, I'll be getting an MRA. But she really thinks this is my real problem.

So once again, Marnie is sooooo right. Gotta get magnesium into the cells.

I'm still on Cat's Claw, but will be remaining off traditional abx. River, I agree with you, and if I have to be on maintenance abx, so be it. But I'd really like to get to the point where I could actually go off acidophillus. I still take 3 capsules 3 times a day. Anything less and my stomach is a mess.

Lymeloco I had Lyme undiagnosed for 10 years. Got rebit 2 years ago and picked up Bartonella. Walked around with Bart for 9 months until I finally went to see my LLMD. (hence, my screen name, because I felt like I had been there and back).

My LLMD weaned me off abx after adding in Cat's Claw about 6 months into treatment because I had progressed so well. Very very gradual process. No, I was not symptom free, but I was approaching 'normal' most of the time.

I've been feeling 'normal' for the last 6 months, and have been getting IM Magnesium injections about every 3 weeks since early May. I still have a little herx each month, which mostly consists of being a little tired and my bp and pulse tend to be higher.... which could very well be hormone related.

Thanks again all... and I'll try to post more often instead of just lurking like I usually do lately.

Kudos to Dr. E and to Marnie! I can't wait to see my Mg test results!

This sounds like the headaches I get. My headaches will get so bad that my vision blurrs and my speach becomes slurred to the point noone can understand what I am saying.

I have found cranio-sacral therapy to be invaluable for those kinds of symptoms. the problem though is it can get pretty expensive and also to find someone who is very well practiced in it.

After I had this done a lot my neuro lyme symtoms disappated (I didn't get lost trying to find my own house).

I used the foot detox patches every day for over a year. I still use them 3-4 nights a week.

Let's hope the magnesium continues to work it's magic. Now that I know where the pain is coming from, I can manage it. Guess it's time for another deep tissue massage. It's a relief to feel normal again.