Don't you just hate it when no one repsonds to your question?

I can tell you that my hubby is always herxing the week of the full moon. This has gone on 20 months like clockwork. That would make it around 28 days. He was on IV Rocephin for 5 months, crashed after 4 weeks. Wasted 6 more months trying more orals and is now on IV Doxy 200 mg 2x day. Big dose, hoping to knock the Lyme down. Time will tell.
 

Don't you just hate it when no one repsonds to your question?

I can tell you that my hubby is always herxing the week of the full moon. This has gone on 20 months like clockwork. That would make it around 28 days. He was on IV Rocephin for 5 months, crashed after 4 weeks. Wasted 6 more months trying more orals and is now on IV Doxy 200 mg 2x day. Big dose, hoping to knock the Lyme down. Time will tell. He also has babesia and is getting heavy treatment for that now, as well.

Have you been treating any co-infections?

Hope you feel better soon.

Wizard
 

Well from what I hear there are cycles and the moon thing is a definite+ for feeling like crap. I dont know a cycle to a flare to be honest. I would always cycle and flare but not herx unitll abx.
 

Have you tried backing off the meds to see if you feel any better? Yes the full moons really set me off.

How long have you been in tx for lyme?

Don't give up just yet. I know how discouraged you must be. Does your LLMD think your making good progress and how long have you been in tx?

I'm in my eight month and am so frustrated sometimes. I know, eight months is nothing considering I've been ill for 16 years.

Hang in there and take care!

Looking at my calendar, I only sometimes have 2 'decent' weeks inbetween worse period ending and beginning again. The time varies a little though and some months it's all over the place.

DLL
 

I just read that the herxes are 28 days. I just came across a good article by JOSEPH J. BURRASCANO JR., M.D., ADVANCED TOPICS IN LYME DISEASE -- regarding this issue and a bunch of other helpful info. It's a long article would you like me to paste it here?

regards
paisley

JOSEPH J. BURRASCANO JR., M.D.

 

Do you know how common this is, in our 8th mo., or could i actually be getting worse? Does your LLMD say. "you can expect to get worse before you get better"?
 

At first I thought it was pure coincidence but, I hear so many say their symptoms are worse during a full moon.

My suggestion is that you just go outside at night and howl for a while. It will really help!!!! ;-)

Bc
 

You sound really down, understandably so. I think if your current MD is willing to treat based on your symptoms, then you should consider trying the protocol he/she recommends.

My titers were positive, but I only had a total of 5 positive bands. At the time of the first test, that was even questionable according to the CDC. But my symptoms were so pronounced that the specialist I was sent to asked me if I was really sick or was I a bit of a hypochondriac. I nearly decked him. My rage by this question convinced him that I really was sick. I wanted to walk out of his office. But, I decided to stay and work with him because he had the b....lls to ask such a question. Don't know why, but his directness drew me to him.

He never did another blood test after that initial meeting. He has treated based on symptoms for 2+ years. I did throw in the towel once and we agreed to take me off abx for a few months. I was so sick that we mutually agreed to go back on abx and to hit the Lyme and co-infections hard. I was prepared mentally to deal with this, because I was physically wrecked. I had nothing to lose.

It doesn't take much to get to that point with this incidious disease. I have not given up. I have been on and still am on some pretty aggressive protocols. Like you, I take it one day at a time. But, unlike you, I made a concious desicion to fight this with everything I have left in me. I have seen people get better who were worse than I ever was. Yes, it took years. But, they are well and living productive lives now.

I hope you can muster up the power within you to keep fighting and to make whatever changes you need to to get through this. It will take a dialogue with your MD. You can take charge of this. Your Dr. probably knows no more, or even less, about Lyme than you. You have to educate one another.

Like you, I have done 2 rounds of Rocephin, Zithromax and Flagyl. Are you sitting down? I have also done Doxycyline, Ceftin Amoxycillin, Bicillin, Mepron, and countless adjunctive herbal therapies. I am only 50% better than I was almost 3 years ago. But, I look at that as the cup half full. I have had to change protocols due to non-improvement or bad side effects. We just keep trying. Each one helps. I think you will find many here who have been down similar paths.

I hope you can hang in there. Don't be afraid to ask your MD to try something different. You have nothing to lose. Right?

Bc

 

5.5 years and still going? Quest by the way, sucks .. I tihnk I know who did your testing, and treated you.

Two weeks later, I relapsed and all symptoms returned. Now, they want me to do IV Rocephin and Vancomycin. Insurance is doing battle now and the doc doesn't believe orals will work.

I am up against a wall now. I know what you mean when you ask when to throw the towel in.
I am at that point now. I have decided to quit treatment and whatever happens ...happens.

It has been 8 months with no treatment now......mainly because I am stuck with negative Pcr testing. Insurance won't pay for another round of abx unless I produce another
positive PCR. I guess the 3 ealier positives don't matter now!

The bueracracy is more than I can deal with.
Sad, but true.
 

Am I herxing? Or getting sicker? (have an appt. with my ID doc on monday to demand a plan of attack)

thx!
RJH