posted
It's 5 days after my 3rd bicillin injection. Before that I had a month on rocephin PICC.
I am jumping out of my skin. Sobbing over "I can't find the envelopes." Throwing things. And if I make a phone call and get put on hold, and have to listen repeatedly to "your call is important to us, please stay on the line," I could seriously throw the phone through the window. The unopened glass window, shattering the window and breaking the phone. Etc.
I'm on 3 Klonopin a day, and it was working okay till now. "Okay" means it was at least taking the edge off. Not anymore.
Every other drug we've tried has backfired and made things worse. As in, intolerable.
Is the bicillin working so well I'm herxing? Is it not working at all and the Lyme has turned my nervous system into a playground? Or am I just losing my mind?
BTW, my usual personality is absolutely nothing like this. And the only way this post is even coherent (if it is), is that I preview it half a dozen times before I send it.
Thanks for any perspectives.
Peggy
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
In all honesty, it sounds like a herx. I could be WRONG, but thats how my first few bicillin shots were for me. After I got through the rough herxs,
they put me in remission and still holding. Hang in there.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
| IP: Logged |
We all react differently to the abx. That said, I have never done the bicillin.....but it does sound like a herx to me.
but.......flagyl, and tindamax made me an emotional fruitcake, you know boo-hoo over if the day ends in a 'Y' kinda thing. And the anxiety was heightened during the time I took these meds.
No rage, quite the opposite, I turn inward, get very quiet, don't really care for contact w/ other humans, except my husband.
When I am off those meds, well I'm back to my ol' self, well as much as my ol' self can be w/ this tick soup in me.
So everyone is different you see. I cetainly think it's worth a call to the doc to see if something can help you through this rough time.
Stella Marie
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Sounds like a bad herx. I do empathize. been there many times. Feel like I could just crawl out of my skin.
I think lymetoo has a point. maybe more time in between injections
posted
The Crime of Lyme (and boy is it ever, but anyway): remission sounds like Heaven with a capital H. I can hardly wait.
Lymetoo: you mean Xanax in addition to the Klonopin I'm already taking? I'd been on Ativan during the month I was on rocephin, and it worked okay, but the rocephin herxes were a walk in the park compared to this. My dr thinks I might have been resistant to rocephin. If the current horror means the bicillin is working, then it's a whole lot more effective for me than rocephin.
Stella Marie: "emotional fruitcake" is a great way to describe it. And I forgot to mention I'm also on flagyl, though only two days a week. It wasn't part of the rocephin protocol.
Peggy
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
posted
Hi Peggy, Your post reminded me of what I go through. I felt your desperation and I'm sorry you're having a rough time.
My bicillin shots were recently increased to twice per week (they were once per week). When they were once per week, I never had a Herxheimer
Within 48 hours of my 2nd shot, I went from mildy depressed to almost suicidal (my primary symptom is depression and it can get BAD). It wore off in about 24 hours.
Then I felt better than I had in weeks. That was a week and a half ago and I have not had a Herxheimer since. Not quite myself, but better.
Good luck and I hope this helps. Hang in there!
Posts: 48 | From USA | Registered: Aug 2006
| IP: Logged |
quote:Originally posted by Peggy in Maryland: Lymetoo: you mean Xanax in addition to the Klonopin I'm already taking?
Or instead of???....Ask your dr....
Feeling better yet??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Peggy,
Did this start with the Flagyl or the Bicillin, or did you start both of these meds at the same time?
I haven't been on Flagyl yet, but I've seen some of my Lyme pals become nearly suicidal or extremely emotional on Flagyl.
I've been on Bicillin a year and I'm one of those that isn't getting much reaction one way or another - it kind of keeps my Lyme stable, but not much better, not much worse.
But before I started, I read several posts from people mentioning major Bicillin herxes, so I was expecting a lot of reaction.
However, I personally react much more to Bartonella treatment than Lyme.
Anyway, you might want to talk to your LLMD about whether it's OK to skip either the Bicillin or Flagyl for a short period so you'll know which one is doing this.
As you know, Flagyl busts open those cysts and can really flood your body with spirochetes.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I remember that, that kind of wavering incipient insanity feeling- yup, does sound Herx-y!!! You WILL get better*!)*!! If you Herx, you WILL get better, it means you ARE responsive. Herxes are wonderful, hard things!!!!!!!!!! The only way out is through*!)*!)! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
NoVAchick--it's once a week because it's 2.4M. Maybe that's why the reaction is so intense. Though I have some depression, that's nothing compared to the "ants are crawling all over me and I'm going to lose my mind" feeling. It's so good to hear it's helping you.
Lymetoo--not feeling better yet and the next shot is tomorrow. At least I got some sleep last night--the previous night I thought I'd knocked myself out with Klonopin, woke up ONE HOUR later, couldn't go back to sleep. Eyes were at half-mast all day.
Jill E.--did not start Flagyl and Bicillin at the same time. Started Flagyl in early December. Didn't start Bicillin till the end of December, when insurance refused continuation of the PICC. Never have seemed to have a reaction to Flagyl--nasty taste, but that's the least of my worries.
Maybe now with the combination of Flagyl and Bicillin, I'm flooded with spirochetes--that makes sense. My big concern has been whether this is working at all, or if I'm losing the battle.
CaliforniaLyme--yes, I tell myself that over and over: the only way out is through. This is the endurance contest to end all endurance contests.
Peggy
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I'm on the 1.2m million units, not the 2.4. Sounds like you got hit with a lot of Bicillin at once.
Please keep us posted and I hope this improves!
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
quote:Originally posted by Peggy in Maryland: And I forgot to mention I'm also on flagyl, though only two days a week. It wasn't part of the rocephin protocol.
I agree with Jill that this could be the culprit. Flagyl can be really rough stuff and cause rage and/or depression.
Like you said, maybe it's the combo of flagyl and bicillin that's made the difference.
Did you call your LLMD about all this?? I would!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Hi Peggy, Wow, 2.4, that's a heavy dose and certainly could explain the reaction!
When I was on Flagyl it was as bad of a herx or even worse - I think there was more rage and agitation with it.
Sounds like you are getting a double whammy! I would definitely call your doctor!
When I am sick, it makes PMS dramatically worse (depression) and I have found that a yellow Risperdal really helps keep me from crying all day. Not sure why, but it works. I just take it as needed.
I am in my first PMS since doubling my shots and I haven't needed Risperdal. There is hope!
Good luck to you and I hope you feel better soon.
Posts: 48 | From USA | Registered: Aug 2006
| IP: Logged |
posted
Peggy, I'm sorry to hear you are still going through this part of the disease. Its a rough time. Nearly everyone has been through a time like this and my personal experience says it will get better.
You sound to me as if you are totally panicking over the emotional roller coaster you are on. I remember the first few months of treatment and I went through the same thing. I of course didn't realize it at the time.
Learning about this disease and reading so many horrible stories from so many here really upset me for awhile at first. I would come here and sit in front of my computer and cry. My personality is not one that makes my cry that often so I'm sure it was the herxing I was going through.
I don't think I herxed as badly as you are in the beginning but then again I wasn't on the heavy duty stuff like you are. I started out on just amoxicillin and ceftin. Didn't get to the IV meds and bicillin until after a year of orals. It sounds like your system is really getting a big shock roght now. I wish I could help you more. Talking about it is good though so keep posting for support.
Posts: 547 | From Maryland | Registered: Mar 2005
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Hi Peggy, You would have though I wrote this as I have just started Bicillin and I feel exactly the same, Anxiety, very deep depression and I feel like my central nervous system is on overdrive - I honestly know what you are going through and we must relise this is a herx, it will pass although we need to detox lots and lots. XXX Rianna
Posts: 1172 | From UK | Registered: Jan 2007
| IP: Logged |
posted
I'm trying to keep things straight, but I know you'll all understand if it ends up sounding screwy. Haven't been able to face the computer till now, as I got little sleep last night and have spent all day in bed except for breakfast and lunch. I NEVER stay in bed all day.
Stella Marie--I drink a gallon of water a day (I keep track). I'm on lots of chlorella and Perfect Food. Natural Calm keeps me cleaned out pretty thoroughly. If you or anyone has any other detox recommendations, I'm all ears (actually, I'm all nerves, but we know that already).
Lymetoo--I have an appointment later today, but it's with a nurse just for the injection. I tried to reschedule so I could talk to the doctor, but the receptionist said he was booked. Getting anything done on the phone about something this bad would be nearly impossible. So I'll talk to the nurse--maybe if I have a nervous breakdown in the office, they'll let me talk to him. My husband was going to be giving the shots till my insurance company nixed that; otherwise I wouldn't even have scheduled an appointment.
NoVAChick--no PMS; hysterectomy 10 years ago or more. Thanks for the info on the Risperdal. It's on my list of things to talk to him about. PMS on top of this--OMG.
Lymeindunkirk--no, I'm not really panicking. I'm just a whole new level of nervous that I didn't even know existed. Never getting a whole night's sleep doesn't help. I could live with the level of relief I get from the Klonopin, but it wears off before it's time for the next dose. Then I just shake and watch the clock till it's time for another dose.
The "level of relief" from Klonopin isn't fabulous, but it's the best we've found. Nothing else has worked. Oh, and have I mentioned crying? The last time I remember crying was when my 20 year old cat died. Till now. Now it's not even crying--it's sobbing.
Rianna--you have my complete sympathy. "Central nervous system on overdrive" is exactly right. What are you doing to detox? I think I'm doing everything I should be doing, but I may have missed something.
Thanks so much to everyone for your support. Okay, now just saying that is making me cry.
Peggy
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Hi Peggy, To Detox I take double dose Burbur Detox, Epsom Salt baths just before I sleep this helps the most, I drink liquid Chloraphyll by Natures Sunshine and also TIAO HE CLEANSE to clean out the bowl to stop re absorbtion of the toxin. I also get a severe physical herx followed by a mental herx - But remember 1 shot of bicillin can last in your body for up to 28 days.
Again I honestly know what you ae going though but we will get though this and I have to say seeing you post lifted me beyond belief, as although I would not wish this on anyone I felt eleif that what I was expeiencing was shared and sadly quite common in a 'Herx from Hell'. I too was on Rocephin (ceftiaxone) befoe bicillin with no herx although I am havng 4 weeks Bicillin then 2 weeks Rocephin and I am herxing on recephin now also, I can only assume the spirochettes moved or tried to evade the bicillin and the Rocephin has blasted them now.
Anyway Peggy, keep strong, detox well and visualise the end of this as I will not last forever, just until the little bliters are killed.
Hugs Rianna XXX
Posts: 1172 | From UK | Registered: Jan 2007
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Peggy - Forgot to say the only thing that gives me sleep (a fll 7-8 hours) is Zopiclone its fantastic. Rianna
Posts: 1172 | From UK | Registered: Jan 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic