posted
Hi All I am to start on Bicillin in near future. I was wondering if you could share your experience with the medicine. I have severe nerve pain all over to the extent I am unable to stand for elongated times, actually nerves just below my breasts and the abdomen are severely effected. My LLMD said that Bicillin could work wonders towards this. I would love to hear anyones experience regarding the same.
Thanks -Radha
Posts: 46 | From Cambridge, MA | Registered: Feb 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
yes, it can.
i was expecting more progress than what i currently am getting out of bicillin (1.2 m units 3x week) but i must agree with your llmd on the nerve pain.
mine was the worst it has ever been before starting, burning, piercing, you name it, i had it.
its close to gone now. a lot of neuro stuff remains as i am nearing 3 months of bicillin and am rather sure its from BLO, so its not suprising bicillin has not had more of an impact.
but, who knows, maybe it will soon...
for sure though, the nerve pain is SO much better, i hope it does the same for you
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Thank you all. I does help to hear good reactions on bicillin. -Radha
Posts: 46 | From Cambridge, MA | Registered: Feb 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
In my opinion, Bicillin is slow-acting but provides many with a very stable recovery with minimal complications. In my case, improvements ccontinued for several years. Yes, I've taken it three times a week for over five years. My only complication has been when I violated protocol and got it too close to the sciatic nerve. Never again! But, no liver, kidney, GI issues. And no relapse. It doesn't seem to help everyone but my sense is that you look around lymenet, the long-term Bicillin users tend to be most stable. There have been several other long-thread Bicillin polls and those intersted should look them up.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
Bicillin is starting to help me a little, slow but steady, nothing too dramatic but I'm not herxing horribly any more either.
For me, the neuro symptoms seem split between Lyme and bartonella, so Bicillin plus Rifampin plus hefty doses of Houttuynia (which is in Dr. Z's HH capsules) seems to be a good treatment program for me. Peripheral neuropathy has lessened, visual changes have lessened, brain is still totally fogged, overall physical functioning is somewhat improved, other neuro symptoms are improved.
I'm still wicked sick, but I feel good about the Bicillin.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Thanks for your replies david and lymeCFIDS... I am happy to note there is still some hope with the Bicillin try. David what would be the thread you are referring to - could you direct me to it. LymeCFiDS... I presume you are a Mass. buddy - wicked sick, thats what I am too. My problem is too much herxes on Mino. and other antibiotics - so probably bicillin is does give fewer herxes may be worth a try. -Radha
Posts: 46 | From Cambridge, MA | Registered: Feb 2006
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
I used Bicillin and ketek for 6 months and improved greatly but then stopped because of yeast problems. (Probably should have stayed on ketek 2 days a week forever.) And relapsed in 3 months. If your dr won't prescribe ketek maybe ask for biaxin to go with the Bicillin. I now realize Bartonella is a major part of my tick borne illness although the Bicillin/ketek surpressed the Bart but it came back. Maybe that's why I relapsed.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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Thanks for your reply. My doctor has precribed mino alternate day with Bicillin shots twice a week. Thought is that it would give me some head start towards tolerating other medications.
-Radha
Posts: 46 | From Cambridge, MA | Registered: Feb 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
What is funny about Bicilln for me, is that I didn't notice the improvement until I stopped the shots. When the "herx" cleared and my mind cleared with it, yes there was some difference.
I have widespread nerve pain as well. My experience is that my combo Bicillin/Biaxin increased the symptoms while on it and I was very discouraged thinking the disease was progressing. Then at times I would have no nerve pain. I used it a total of 7 months one time 2 months the second time 5 months and stopped last month. I can say it helped some nerve symptoms, they aren't all gone. I intend to go another round in the future, for now I am giving my body a much deserved break.
One thing strange, when stopping it, for me there was a nerve pain increase but it seemed to settle to a more tolerable level after being off it for awhile.
Watch out for the "emotional" herx, weepy feeling, crying, etc. this is pretty common as it penetrates the brain.
I personally think Biaxin has been the best for nerve pain as it treats Bart and nerve pain usually = bart in my experience. The two together I'd say worked pretty good.
savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I used bicillin along with other meds such as seprta, plaq, and biaxin and that was the best combo for me.
Bicillin can push the keetes into a cyst form, so make sure your llmd adds a cyst buster into your treatment plan.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
Thanks for the replies lymebytes and savebabe - its interesting that lymebytes saw the effects only on stopping the meds. Regarding the cyst busters - thats the reason my doc. is prescribing mino.
-Radha
Posts: 46 | From Cambridge, MA | Registered: Feb 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Radha, The first round last fall 2 months long was horrible. I always start off on Bicillin the first few weeks feeling better than ever, then the herx hits me, the dose was much too high for me and I quit long before my LLMD wanted me to, he even lowered the dose, but it didn't help. I felt awful following those 2 months for at least 3 months.
One of my LLMd's hoped I could continue (also in Burrascano's treatment guidelines) that Bicillin should be used 6 months - 1 year before seeing really good results.
My second "round" I once again felt immediately better again the FIRST month, then the herx hit and went on and on and on..I have nerve pain literally from my scalp all the way to my feet and it flared it considerably, very painful. I hung in there anyway for 4 more months, but the pain persisted at high levels. Brain fog set in (which has never been a problem for me) and I knew it was killing in the brain, then lastly, the emotional herx, weepy, feeling hopeless, crying.
When the herx didn't stop once again, I had to stop it. 5 months in a row I thought that was pretty good considering the amount of pain I endured. It took about a month - and I noticed a few symptoms were better, nothing to get really excited about, but I wonder if I could make it 6 months to 1 year how much I would really improve.
On the flip side, severe joint pain came on hard after stopping it which is strange because I don't get joint pain, nerve pain is my main issue. My joints really hurt since stopping it, nerve pain is still there for me, just slightly less severe.
I have a lot of hope for Bicillin and that is why I keep returning to it, it has helped many, but so far, not the wonder drug I had hoped it to be for me.
That may be because I have one co-infection left that is "hanging up" Lyme progression. According to my other LLMD he said Bicillin is a drug you want to do after all co-infections are cleared and only Lyme remains. He also stated that the penicillins temporarily do help nerve pain because they are beta lactam's and they reduce inflammation. All I could think was... Hmmmm, interesting, so many doctor's so many opinions!
I have ehrlichia left to deal with and have a hard time on the drugs that will kill it. But when ehrlichia is finally overcome, I will then only have LD left and I will likely return to Bicillin or possibly IV pen.
Many believe the penicillin's push Ld into cyst form, Rocephin is known to as well, but the macrolides (i.e., Biaxin) taken with it may prevent LD from going into cyst form according to the abstract below.
I posted this once before here fairly recently.
(Hope Bicillin works wonders for you.) ~~~~~~~~~~~~~~
Studying Bb cysts - came across this at Pubmed, thought you'd find this interesting that IV Rocephin and IV Peniciiin may cause cysts....well here is Pubmed abstract:
Cystic forms of Borrelia burgdorferi sensu lato: induction, development, and the role of RpoS. Murgia R, Piazzetta C, Cinco M. Dipartimento di Scienze Biomediche, sez. Microbiologia, Universit� degli Studi di Trieste, Trieste, Italy. [email protected]
It has been demonstrated recently that cells of Borrelia burgdorferi sensu lato, the etiological agent of Lyme disease, transform from mobile spirochetes into nonmotile cystic forms in the presence of certain unfavourable conditions, and that cystic forms are able to reconvert to vegetative spirochetes in vitro and in vivo. The purpose of this study was to investigate the kinetics of conversion of borreliae to cysts in different stress conditions such as starvation media or the presence of different antibiotics. Using the same experimental conditions we also investigated the possible role in cyst formation of RpoS, an alternative sigma factor that controls a regulon in response to starvation and transition to stationary phase.
We observed that beta-lactams penicillin G and ceftriaxone, the antibiotics of choice in Lyme borreliosis treatment, favoured the production of cysts when used with serum-depleted BSK medium. In contrast, we observed a low level of cyst formation in the presence of macrolides and tetracyclines. In order to elucidate the role of the rpoS gene in cyst formation we analyzed the reaction of the rpoS mutant strain in comparison with its wild-type in different conditions. Under the same stimuli, both the wild-type borrelia and the rpoS knock-out isogenic strain produced cystic forms with similar kinetics, thus excluding the participation of the gene in this phenomenon. Our findings suggest that cyst formation is mainly due to a physical-chemical rearrangement of the outer membrane of Borrelia burgdorferi sensu lato leading to membrane fusion and controlled by different regulation mechanisms.
pubmed - search words: borrelia cystic from penicillin g
posted
Thanks for the detailed reply Lymebytes. Your reaction to bicillin sounds like how I feel on most tetracycline derivatives - only problem is I see no feeling better but only get sicker and sicker. New symptoms come which never leave. Thats why doc wants me to try bicillin. -R
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