Topic: Bicillin users help - need your experience and advice
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, I am on my 15th week of Bicillin. This is my second attempt. I tried last fall and only made it 7 weeks, I was doing then 2 - 1.2mu shots per week, that created such a horrible herx, hurting scalp to feet and vertigo to boot, I had no choice but to stop.
This time my LLMD started me much lower, I am on Biaxin w/it. I started at the end of Feb., I almost immediately felt better...then the 4th week just crashed incredibly. I was ready to give up again, but I continued.
April was horrible the entire month I think I herxed.
May was a big payoff having nearly 30 good days.
June 1st hit and I swear I woke up feeling like I had back peddled 2 years with so many symptoms at one time, I have just cried all week to the point of deyhdration.
Pain, pain, pain. Early awakenings, tremors, back of head pain, joint pain, nerve pain, you name it. This past week has been hell truly horrible.
I have zero feelings...anger is probably the only thing I am feeling, angry about May being so good and now another total crash.
I am wondering if Bicillin is not the right abx for me.
Did any of you experience this...really good days and then just the worst possible? No in between here - flat out great or miserable.
My LLMD said 6 months to a year on bicillin and then I read that Burrascano recommends the same thing.
How do I know if this working..I honestly feel so horrible right now I cannot think straight.
I think the worst part was May...I felt so close to normal and I had HOPE that I had hit the right abx finally and now...back to what feels like square one.
When did you notice (if ever) a clear indication that bicillin was working for you? Are these monthly swings normal for this abx?
It is driving me nuts, feeling hopeless, depressed - not by choice - I can't change it - I feel crushed.
LA Bicillin shots can produce really harsh herxes that are disabling, if you aren't already disabled and I'd guess you are because you're herxing bad.
After 6 months of IV Rocephen (another good neuro, cognitive, fatigue, muscle pain and arthritis antibitoic) I went directly to 10 months of LA Bicillin shots 3 times a week.
The first bicillin herx lasted 6 1/2 weeks and that was a no-brainer, meaning mostly brain dead! That herx overlapped the next, 4 weeks later.
They helped me very much. They are very good for the brain symptoms! They're called a natural antibiotic and they aren't processed through the GI tract!
I've mentioned this because maybe that will help you through it.
Only you can decide if you should continue. However I will say they helped neuro-brain, cognitive things, exhaustion arthritis and muscle pain at the back of my head, my neck and shoulders.
I guess you've heard it before, and here goes again: hang-in there!
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Thanks Daise - was there any specific turning point that your remember? 3 mos, 6 mos?
You aren't kidding, they penetrate the brain...I felt it before on bicillin, so flat feeling, hopeless, tearful...drives me nuts!! I am sensitive to abx at low doses, I feel them killing...I'd be dead I am pretty sure at 3 shots a week! You are brave!
I want to hang in there badly - I saw a light in May...but another crash and burn!! GEEZ!!!!!!!!
Thanks very much. I know I need these "brain killers" that are NOT fun
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
It sounds like bicillin is very much the RIGHT antibiotic for you, although it also sound like a couple of things are going on......
You are probably having a high kill rate with bicillin and you body will not be able to clear the Neurotoxin/Die Off quick enough, so you are probably getting higher levels of neurotoxins with every die off - you need to check that you do not have the genetic detox gene (Labcorp 5-part HLA Test number:012542) if you do you will need to have a slower kill rate and a higher detox and work with a specialist that enables you to detox all channells.
Also Bicillin can often make co-infections present or pop from the bone marrow, with myself I never herxed until Bicillin and never realised I had co-infections, they then presented themselves with evengence both Bart and Babesia
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Rianna, Interesting about the co-infections - I have one untreated and I think it is really stepping up.
I did the HLA test that you mentioned, how would I phrase it? I am not susceptible to lyme toxins? Would that be right...I did show a sensitivity to molds though..whatever that means, I don't even have allergies, so that took me by surprise.
I wonder if anyone knows if there is any truth to this...my LLMD said if I can handle bicillin, I can handle Flagyl..any opinions on that?
Bicillin has (twice now) sent me spiraling into depression...is that because it crosses the bbb and is killing the brain. I hate this depressed feeling, the pain is bad enough.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Lymebytes,
I have been on IM Bicillin 1.2 mu/week since the end of March. My experience has been somewhat like yours.
I have only had 4 days to a week of feeling good though followed by a complete crash...accompanied by weepiness, and new symptoms.
This seems to clear somewhat and then I start all over again. It seemed like it was every Sunday that I would become weepy (my shots were on Mondays) so now he has me taking shot every sixth day.
No weepies today.
I know that it is hitting something so I just grit my teeth and move on.
Hope that this helps somewhat, Feelfit Posts: 3975 | From usa | Registered: Aug 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I've been on Bicillin for 7 months now. Starting w/1x week, now up to 3x/week. Hideous herx followed by major improvement. Most neuro. Love this stuff. Sounds like it IS the right drug for you based on what is going on.
Posts: 3528 | From US | Registered: Apr 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
how much do these shots hurt. What do they feel like? Are they comprable to a tetnus shot?
Just wondering since Im thin.
-------------------- "Say it straight simple and with a smile."
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pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Bicillin works pretty well for me; I have been improving since on it for 8 or 9 months now. It seems to work well in conjunction with plaquenil and biaxin.
I feel like I have been herxing for much of the last year, but it is relatively easy to tolerate with bicillin and has gotten better over time.
There is a long thread in the newbie links about bicillin, which has info on how to do painless, or less pain, injections. My key to tolerable injections has been using lidocaine cream and icing the area beforehand.
Posts: 2557 | From home | Registered: Aug 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Thanks for your comments they are helping me realize it is the medication making me feel down and out.
posted
I'm glad you posted this, because for me the emotions since I started Bicillin 5 wks ago have been INTENSE. I have had some improvements, and some areas where I feel like I'm backsliding.
I have definitely been an emotional wreck, alternating with periods of feeling absolutely shut off and numb like a statue. And I cannot do cognitive tasks to save my life.
I have also had these bursts of functionality and in those moments I get excited and feel like it's working, but then I get hit with something negative.
So my experience seems pretty consistent with yours and the others posted here. I hope for both of us it's a good sign!!
Posts: 929 | From Massachusetts | Registered: Oct 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
LymeCFIDSMCS, OMG!!! EXACTLY!!!! Everything you said is right on the money! I can't believe it... I too feel better in some ways and worse in others.
I get excited (literally - like hey this is great, the best abx, I love it!! )
Next I am crying, "Something is wrong this isn't working, I am sliding downhill and I CANNOT do this!!
Next, I am "care LESS" - emotionless - flat.
Then angry - "I am sick of this!"
I wake up sometimes, don't know what day of the week it is - stutter, stammer. Then I will have clarity for awhile..
This abx/herx is WILD and has given me multiple personality disorder!
Your post makes me laugh - in a good way - you have nailed it.
You asked if there were any turning points. No. Sorry! But 6 months later (and with machine weightlifting--Dr. Burrascano's recommendations--and stretching in a warm pool,) I felt very much better when I was not in herx!
What has helped me through all the long bicillin herxes has been these specific exercises. I always feel better, body and brain, right afterwards and into the next day.
Mostly I feel better in my brain from these exercises!
It's harder to exercise in herx, of course. If we wear ourselves out with exercise then we hurt ourselves. We need energy to heal.
This isn't HE-MAN stuff! Make it a bit of a challenge, but not so that you huff and puff, or your heart pounds or you do grunting!
No aerobics--that's bad news for Lymies. All that does is waste our energy.
My physical therapist taught me to do one exercise ten times, and that was a set. Rest for 30-45 seconds and do another set. 3 sets altogether, for each exercise.
Lucky you--a weight lifting machine in your home!
Dumbbells from WalMart may help round-out what the machine can't do. (5# and 7#.) Then there are 10#, 12#, and 15# single dumbbells if you lay down on a bench and with both hands, move the dumbbell over your head aways. Work up from 10# to the #15.
After each session, rest for a good while. No stress. This regains energy to fight Lyme!
This type of exercise helps build strong cell walls and helps all our cell tissue!
posted
I am into week 5 of the shots...2nd week of 3 shots a week...
the 1st couple weeks very very rough herxing wise physically (a lot of neuro symptoms)
The last week or 2 the emotional stuff hit hard
the emotional herx has been horrid - today and yesterday were better, hopefully it's abating...
Between the anger, weepiness, and anxiety, my head's been spinning. Then I'd have a day where I felt fine emotionally, then it starts all over...
At least I'm feeling again though- that was a big lyme relapse symptom for me - feeling absolutely nothing, having no interest in anything etc
I am definitely starting to "turn the corner" with the shots though - was out doing errands by myself this week, started digging myself out of the mess this house has turned into etc, I can talk on the phone again....
I am also taking high doses of the Pekana drainage remedies and some nutramedix stuff and a bazillion other supplemements..which I'm sure are helping too
I am definitely coming around....
BTW, the shots don't really hurt if done properly (I think)
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Larkspur - yes again..exactly.
I have been on one shot per week since early Feb, my first month was great! Then April hideous, then May I was SURE I was beating this...nope, June hit and I slid downhill faster than you can say "where'd she go?" In the pit of despair is where I went, crying, just a mess.
I will go on. I too am on many Pekana's detox, I rotate them...I love them! Activated charcoal helps too.
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