posted
Here I go again. A very anxious and depressing time continues. Now I've got my kids crying. !@#$
I understood I was likely having a bart relapse after stopping levaquin 3 weeks ago. Been taking low-dose (100mg) minocyline for lyme for 3 weeks. I thought I had finished babs.
I am confused and concerned about bicillin rx llmd just doled out. Not only is it $400 for a few shots, but it appears to aimed for supressing lyme, not killing bart. The Rosner book lists it as bad news, cell wall inhibitor, to be avoided as it makes lyme worse. I did amoxicillin initially 5 years ago and apparently that just drove it into remission.
Does anyone know the thinking on bicillin? Is there a non-levaquin bart treatment to do before going after lyme?
I try not to 2nd guess llmd but this anxiety and heart pouding makes everything a crisis...especially the abx routlette and side effects issues.
lm
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Dear Local,
If you are planning to make a cake... having more than one chef in your kitchen at a time is going to drive you nuts.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
In an attempt to get yourself better quicker... and keep in mind it ain't gonna happen...
It looks like you might be mixing and matching too many protocols.
So stop and take a couple deep breaths.
OK?
Checking out all avenues and ideas is NOT a bad thing when checking out how to make a cake... but it will make you nuts having too many sources of information guiding or influencing you. I know.. I went through that and have seen others do the same.
Let's get simple for a minute... ok?
I don't know why you mentioned Bryan's rife book. Are you doing rife AND antibiotics? If so... best check with your doctor... as I won't suggest anything in that case.
BUT... if that is not the case...
You said...
"The Rosner book lists it as bad news, cell wall inhibitor, to be avoided as it makes lyme worse. I did amoxicillin initially 5 years ago and apparently that just drove it into remission."
1. Nearly all antibiotics (few exceptions and even that has not been totally documented) can do the same thing from what we know. It isn't just Bicillin or amoxy. Bacterialstatic and Bacterialcydal (my spelling stinks- sorry) can be involved here too.
2. There is no proof that the amoxy did that in your case or anyone's case. You can assume it if you'd like.. but keep in mind the dose may have been not enough.. the duration... etc. And/or the spirochetes were in places already that couldn't be reached.
3. You may have co-infections complicating the picture. But more importantly.. you may have contracted infections we don't even know about yet in that mix.
4. Having TBD's is complicated. Treating the most obvious and distressing symptoms.. no matter what the source... is usually a good plan.
5. Tests for TBD's suck. Don't count on them to detect what is wrong as they are not able to catch what is going on in all cases... many cases.
````````````````````````````````````````````
You mentioned you've been on low dose mino three weeks. Did you consider you might be herxing? Hence the heart poounding etc you have now?
Did you consider that to some people... 10 rather than 100mg is a big enough dose and can knock folks on their backsides?
LOVE the cake advice Tin Cup offered. If only I had that mentality a few times or two when I needed it.
For what it's worth, I endured several months of bicillin injections some time ago when I was in a much worse state of existence. At the time, it did not seem to help, as nothing has ever seemed to really help. On its own. I think it is all synergistic and not any one antibiotic, at least for me, as been a God send cure all. Rather, they all have played a part.
Interestingly, while the bicillin did not make me feel better while I was taking it and did feel quite awful at time, my CD57 count rose during the time period when I was taking the bicillin. My CD57 hasn't ever reached a normal limit, but in tracking things as I did then, it was during the bicillin that the CD57 rose upwards. This did not happen with any of the other antibiotics.
I am not sure if that means anything.
I am a big fan of bicillin but totally NOT a big fan of the shot experience because I am certain nerves were hit by the nurses who administered them and that kind of pain there are no words for.
I think long term low dose bicillin is a good idea, at least in my world, and if it can be afforded.
And plus, I am under the impression that at least with my experience of the lyme etc, it is more than just infectious.
posted
Thanks Tincup. Excellent points all, as usual.
Yes my initial thought was that I was having herx reaction to the minocycline. Trouble is I had just stopped levaquin due to tendon issues, so llmd pa thought it could also be bart coming back on me. The symptoms appear to overlap quite a bit as far as I can tell.
I actually dropped back on the mino dose (was supposed to be 100mg 3xd) as I was sure it was herxing. But now 3 weeks later the tendon issues are pretty bad and the 'herx' sympt are worse...which makes me think both levaquin toxicity and bartonella return.
Anyway the thought of throwing bicillin into the mix (per llmd recommend) has me kinda freaked out, since I thought we were chasing bart. I do plan to discuss with llmd in a week. There is just too much going on.
Oh yeah the Rosner book was "Top 10"...I remember this abx chart he did with skull and crossbones next to all the penicillins...have you seen that? Anyway, in my delerium, my 8 week treatment with amox 5 years ago seemed to fit that trap.
posted
The Rosner book I read made a lot of claims with no evidence ... not even anecdotal evidence. I don't have any problem with Rife, it's the claims made against abx with no support that I am in disagreement with. The book makes it seem impossible to get better on abx and that you will make steady progress with rife.
That is just not what I've seen. Also, it's not the experience of at least my LLMD.
I have to agree with Tincup .... it's a bad idea to get too many cooks in the kitchen.
Also, I agree that many meds and even saunas (according to my LLMD) can push borrelia into the cyst form. That is the reason for a cyst-buster, which can be taken at the same time as the other abx's.
I don't know what's causing your immediate symptoms .... just some food for thought.
Bicillin has worked miracles for many. The relapse rate is high for Lyme Disease, so it may not have been the amoxy at all that caused yours to come back.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
WildCondor
Unregistered
posted
Bicillin is excellent stuff, and is was a tremendous help to me. The Rosner books are all just opinion and non medical garbage. LLMD's use Bicillin because it is one of the best options in treating Lyme and it is great to use with other medicine combinations.
IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Localman..
HOLY COW!
300 mg of mino a day? OUCH OUCH!!! That is enough to cause you jumbo herx stuff going on ... just that alone.
And now that you have explained more in detail... I'd be REAL leary about starting the Bicillin too.... right now.
NOT because it is Bicillin... but because you are already in herx mode... feeling effects big time.. and will be adding something very powerful to the mix.
Yeah... if I were you I think I would have to be a bit freaky about now. That is a lot to deal with... for sure.
Plus.. I know that I always thought the symptoms were coming back... and to be truthful... was scared the meds weren't working and I was just gonna die cause nothing made me better.
But bad herxes do that. And they are famous for confusing the situation... and making you doubt your own self!
And while I am spilling my opinions all over you... hope you've got a towel.... HA!
I know that years ago when I whined and a few others whined when killer herxes hit.. some docs would say...
"oh.. if you feel bad just maybe skip a dose and then go back on it. Or lower the dose for a day or so and you'll be fine."
It made us all feel like whiny sissy babies... as others were able to slop it all down with no more than a few aches and pains for a couple of days... and that was their herx. .
But let me tell you what. When I put my foot down and publically said I am not doing that anymore... call me sissy or whatever...
Zillions of people.. who had been trying to "suck it up" and survive major herxes and not whine about it started coming out of the woodwork. I thought I was alone in this situation for a long while.... but far from it.
We've finally made our point to many of the LLMD's.. who were NOT real happy about having us stop the meds.. but we kept objecting and finally they listened.
Now a day, many times folks are told to take antibiotics for three weeks then stop for a week and resume.
What we've learned is that stopping for a day or two... or continuing with a lower dose.... most of the time does NOT relieve the problem.
You need to stop completely till you clear out the garbage and toxins... and then at that point you want to restart.
There are still some LLMD's that have not grasped that concept yet... and let ME get my hands around their necks when I am deathly ill and they will listen (ha)... just kidding... but I have thought about it...
But they just are not hearing from their patients who REFUSE to continue the meds because they are so much sicker... and/or they will stop meds totally and NEVER go back on them because it is too killer-like.
Many of us are afraid once we've FINALLY found someone to help... we don't want to rock the boat.
Trust me...
ROCK THE BOAT!!!!
You can cry UNCLE with no shame... rather than being so polite and brave. You MUST do it. Bad herxes are NOT good for you!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just because I keep writing to you doesn't mean I'm in love with you or nothing.
It just means that if I stop I have to go back and do all the other work I don't want to be doing... the political junk.
OK..
I did want to mention.. the penicillin.. in various forms.. was originally perscribed many many years ago to treat Lyme. In Europe it was VERY effective.
In USA the ducks have us believing we don't have the same strains or symptoms as in Europe (whoops.. wrong again) and doxy is what was needed.
The USA ducks actually refused to listen to the European doctors because they thought they were so high and mighty and wanted to do it their way. So penicillin sort of fell by the wayside... in a power struggle.
In addition... Dr. B mentioned that penicillin didn't seem as effective as some other drugs... back when we didn't know about all the coinfections.
There are still coinfections out there we haven't even identified or named yet... so it really is a total "pot luck".
The fact is.. of all the meds I've ever used.. penicillin has ALWAYS done the best for me. ALWAYS.
Luckily.. after going down hill again.. I am now using it for the first time in years.. and in low doses.
I am very pleased with the results. Many using bicillin are too. For some it is the ONLY drug they need or want after trying the rest.
So when you finally feel better from what is going on now...
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I've been in treatment for nearly four years. I started Bicillin shots two weeks ago.
I now refer to it as my "crack." Quite literally, my "butt crack".
I have NEVER experienced such a drastic turnaround as I have with this medication. In about ten days I was up and about, and yesterday walked five miles.
This is after being totally and completely bedridden for three months, and only minimally functioning this past month.
I feel like it is my miracle. I have not herxed at all yet. I can't even believe I can feel good again, and I want to dance and shout it from the rooftops!
My LLP described Bicillin as "flying under the radar" of the Lyme, so that it can give a "sneak attack." The bacteria doesn't detect it's presence, so it is able to slowly and steadily kill it off.
All I can say is WOW. Keep 'em coming.
Also, mine were less than $400 for ten shots, not "just a few", which is a ten week course for me. So that is actually less than $40 a week.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Yes I started Rosner book last summer back when I was even more delirious, a b-day gift , and have no idea how he came up with those generalizations of abx classes...I guess I was desperate to make sense of my relapse.
If it weren't for the disabling tendon stuff on top of mino herxes/bart(?) I might feel better prepared to try the bicillin...but this morn 2am I thought I might be headed to a psych ward...but not before someone could pull the hot swords from my body.
Bicillin does sound like an excellent tool...but I'm still hung up on the premise that you first have to treat the coinfections.
I probably just missed it, but is there a track record on bicllin for bart?
lm
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
When I started treatment 4 1/2 yrs ago, I was treated with antibiotics for Lyme 1st, then coinfections, but times change so I have know idea what the protocol is
1.I did orals antibiotics 3 years + coinfect trtments 2.Diflucan approx 8 months + alternative treatments 3.Alternative only for last 8 months or so = big awful relapse which I am currently in
-------------------- "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
| IP: Logged |
posted
There are members here who used veterinary bicillin and had good results . You can search it and I will also pull posts. It is literally CHEAP! My pharmacist says vet meds are exactly the same , but do your research. It can be bought over the counter easily !
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Directly from Dr. B's 2005 Edition
Benzathine penicillin - Surprisingly effective IM alternative to oral therapy. May need to begin at lower doses as strong, prolonged (6 or more week) Herxheimer-like reactions have been observed.
I know a lot of people who have gotten better with Bicillin. It can be a good abx choice for some people.
Unfortunately there are no quick fixes with this disease.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
| IP: Logged |
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I had great results with IM penicillin (Bicillin) but I feel strongly about using it with a cyst buster, such as pulsed Metronidazole (Flagyl.)
I did heavy doses of IM penicillin mixed with procaine, and three days a week of Metronidazole. The shots made me feel great, the pulsed Met made me feel awful. All in all, a very good choice.
You can get Bicillin look alikes in powder form from overseas for much cheaper that doesn't need refrigeration, or in veterinary form for pennies, if you don't mind the illegality, preservatives, and injections every other day because it doesn't contain benzathine.
There are posts on all of these if it doesn't make your head spin too much.
I used a Bartonella homeopathic series remedy from Deseret Biologicals that seemed to clear my Bart entirely, if you are into that sort of thing. Not everybody can get behind energy medicine, but it worked well for me.
I cleared Bart first, and then went after Borrelia. I don't think my body would have responded well to the double attack. Whatever floats your boat, as there is no one right way to do this.
Sorry you had a bad day. Hang in there.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
| IP: Logged |
jamescase20
Unregistered
posted
Yeah, you cant take a tetra with a penny.
IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
LocalMan, I have the same LLMD as you, and I note that he has prescribed Bicillin shots in conjunction with bart treatment, because Bicillin will help suppress/weaken bart, and then you can zap it with bart drugs. He is treating several people I know with a Leavquin/mino or doxy/Bicillin combo (myself included).
Bicillin alone does not treat bart/BLO.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
posted
My son is going back on bicillin after having good results a couple of years ago.
Our local CVS was going to charge $50 per shot (1.2 IUs), but the insurance co. put us in touch with a pharmacy that specializes in injectibles. Curascript in Orlando - 1 800 504 9265, they charge about $20, which makes our co-pay manageable.
There are also overseas pharmacies if your insurance doesn't cover. Nancy
Posts: 688 | From Florida | Registered: Aug 2001
| 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!
![[Big Grin]](biggrin.gif)
![[group hug]](graemlins/grouphug.gif)
![[lol]](graemlins/lol.gif)
![[Frown]](frown.gif)
, and have no idea how he came up with those generalizations of abx classes...I guess I was desperate to make sense of my relapse. 
Printer-friendly view of this topic