posted
what is the cycle length for herxing? is it 21 days or 28 days? been on abx about 28 days and feel like crap today. have been feeling ok up until today. how long do your herxes usually last? this is my third go round of abx 2 iv's rocephin and now zithro and flagyl, llmd said iv won't work again because of resistance. wants oral unless gets worse then iv keflex or something. when do you know when to stop abx and just give up a live with symptoms? it appears that i will never get better and am tired of all the drugs and the feeling of being on the drugs, so how long?
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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.
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
dont you just hate it when it posts twice?
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.
Posts: 2905 | From New England | Registered: Sep 2004
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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!
Posts: 738 | From Colorado | Registered: Oct 2004
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Yes, full moon seems to be extra non-fun time. This is usually when I feel worse, just before and just after and this time worse than ever, even though I'm 9 months into treatment. (or I'm relapsing, but hope not).
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
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
docdave, Sorry to hear about your herxing...been there and I don't like it. My 4 year old is going through one right now and I feel so badly because I know how tormenting they can be. Doing any podi-patches, epson salt baths to pull out as many toxins as possible?
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?
posted
Snowboarder - I've been on abx for 8 mos. also and currently feel worse than ever (undxd for 5 yrs)!
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"?
Posts: 94 | From Maryland, USA | Registered: Jan 2005
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
28 days is not the magic number but is a good one to start with. Everyone's cycle is different. I keep a daily journal of symptoms - have for 2 + years. My MD and I recently noticed that I herx always during a full or new moon. The calander I was keeping my notes on coincidentally had the lunar cycle delineated.
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!!!! ;-)
posted
i've been on treatment on and off for 5.5 years rocephin twice, doxy many times, orals, herbals everything. i have a heart murmur from lyme, high PSA which gets bx every six months from lyme, bad vision, bad brain,yet i still try to go on with my life living with the symptoms. i've gotten to the point i have resigned to having lyme for the rest of my life and living life day to day. tested neg for all coinfection but was done at quest lab which sticks so who knows. my new llmd didn't even run a blood test, he looked at my daily log for the last week and said" i guess you have a relapse of lyme again" duh, well at least he said that. my other llmds treted me for lyme but would never commit to saying that i had lyme only that i might have lyme. this is with a elisa of 5.8 and a 9 positve band western blot. my g-d even the cdc says i have lyme by their standards , why won't anybody commit, its not a crime it's a disease. and yes my last to herxs coincided with the full moon but it might have been when i started the abx protocol, 2 days before the full moon.
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Dave:
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?
posted
When I was on IV Rocephin, I herxed about every 4 weeks. I started to get better towards the end up teatment when they decided to pull the IV line.
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.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Most of my herx's would start depending on infection load around 28 to 34 days usually all in that time period except when I first started treatment I think because of the different strains I had cycleing at different times.
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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docdave130
Unregistered
posted
thanks for your help. had bad herxing weekend out of commission for 2 days out of 3. better today hopefully next herx will wait a month. seeing llmd tomorrow. we will see
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posted
All, newbie- still learning- dx in Jan. 4 weeks of IV rocephin, relapsed, put on Amoxy- today is exactly 28th day- I just counted afer reading the above posts. I was good until noon and became extremely nauseous, unbelievably bad headache- and then violent retching. Nausea is awful. I was working on the farm feeling great and when noon hit somene pulled the rug out. I can't remember feeling so bad. Oh- I'm running a big fever as well.
Am I herxing? Or getting sicker? (have an appt. with my ID doc on monday to demand a plan of attack)
thx! RJH
Posts: 4 | From Arlington, VA USA | Registered: Mar 2005
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