There are so many different protocals and/or changes during the course of treatment.
I think it would be nice to know what the favorites are and why.
So....if you dont mind...what was the BIG gun for you? I start treatment in a week so I cant even contribute to this posting quite yet.
Posts: 160 | From california | Registered: Dec 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hey Panic,
You'll get a million different answers as everyone responds differently. Normally, they start you on doxycycline which the majority of folks respond to fairly well.
Continue to post here as your treatment progresses and folks will be better able to make some recommendatios.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
I am hopefully having a minor relapse but RIFAMPIN saved me.
Posts: 48 | From Toms River New Jersey | Registered: Apr 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi panicbegone,
It can depend on which strain of BB you have .
There are something(forgive my lyme brain)like a hundred or more different strains of bb & also many different strains of co's as well.
So what works on some will not work on everyone.
It can also depend on how long you have had untreated lyme & co-infections as well as personal tolerance.
I have been on so many different combinations. Had lyme for 20 years so I can't really pick one. I guess for me there never was one big gun, more like an infantry
Sorry I couldn't be more helpful & hope you can find one that works for you.
Blessings, Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hubby had good response to Doxy at first........his other favorite is flagyl...
He's doing mino now, and it really seems to be helping him.
It's just so hard to say......
Posts: 1366 | From Southeast | Registered: Sep 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
For me, the big gun has been ceftin. I started treatment taking that and am still on it now.
Over the months, I've also had success adding rifampin and tindimax -- the first for Bart and the second as a cyst buster.
I do have to say I had a herx from h#ll when I started taking the ceftin. The first month on it was unimaginably hard. I never seemed to plateau with it, so that's how we've progressed.
But the one thing I've realized is that everyone responds to things differently with these diseases. I think that's why it's so imperative to get to a good LLMD.
At the beginning of treatment, my LLMD told me things would likely get much worse before they began to get better. I'd been udx for 9 years, and my doctor was right. It did get worse. I chose, though, to stick with one antibiotic primarily, rather than switching, and for me, that turned out to be a good course.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
For me I made HUGE strides with Ketek and Mepron for Babs. The Ketek really helped with my arthritis and neuropathy.
I then switched to Omnicef and Tindmax and am still making progress just not as drastic as with the Ketek but then I am so much better I don't have as far to go.
I was sick for a good 5 years and in pain management before treatment and Ketek got me off narcotics and back into my life. I was amazed.
We are all different.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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posted
Without a doubt...the combo of Mepron, Zithromax and Artemisinin...Mepron being the "big gun".
As you can see, everyone seems to have their own "big gun"...I would guess it depends on the strain you have, and what ever works best WITH your body to attack the strain.
B
-------------------- Bill
**Question everything...it may save your life!!!** Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005
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posted
IV Rocephin the first time. Was working well until insurance stopped payment.
Second time, not so good. I think I lost time and the magic moment by stopping it too early the first time.
Posts: 867 | From PA | Registered: Jan 2006
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posted
For me IV Rocephin the first time was awesome but as said above not as good the second time around. Rifampin during the summer this year got my brain functioning like it hadn't in two years.
Patrick
[ 07. January 2007, 03:19 PM: Message edited by: Patrick ]
Posts: 142 | From Florida | Registered: Oct 2005
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Bicillin LA with Biaxin
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
NO antibiotics helped me. They only gave me yeast and made me lose 30 pounds. Thanks to antibiotics I feel like my lyme treatment has been set back. This is not a slam to those who use antibiotics successfully, but they did not work for me at all. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8885 | From Illinois | Registered: Aug 2004
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Me either Hiker- everytime i try abx I get set back. I feel better off of abx....they cause me yeast and burn my IC bladder horribly.
Difflucan - got rid of right side of body numbness and allowed me to drive again.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
doxycycline by far..ceftin second...ketek third...amoxxicillin high dose... eric
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
Yes i notice there is a variety of answers. Thanks you to all who shared, even those who have not YET found success with an antibiotic. This may be your year of improvement!
I hope that i too will find a "big gun" Posts: 160 | From california | Registered: Dec 2006
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
VERY!!!!
good topic, I find this very interesting to look at what others have help them. I am a bit of a detective and I love posts like this, thanks.
No big gun for me yet, maybe there will not be, I hope there will be though.
Antibiotics are a must for me.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
Thanks Trish, Yes i am totally the research/detective type. Hehehe I just think info like this is worth sharing. Im on my 2nd antibiotic pill today...not exactly sure if i should even continue (mild itching, mild need for deep breaths, mild tension and body aches) but i think im gonna stay with it.
Hopefully ill be able to input for people that want opinions on doxy in the future.
Posts: 160 | From california | Registered: Dec 2006
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posted
As someone sais somewhere up there, there are as many proper approaches as there are people, and what works for one may not help another. However, if you see reports of a case that appears similar to yours, try to get more info if you need to, especially if the report was favorable for the treatment!
It is very important, for example, to ascertain whether you have "co-infections"; other dideases you got from the ticks along with the lyme. These can foul up tests, make the diseases much more nasty, and be dangerous in their own right for some people. The most common are babesia, ehrlichia, and bartonella (also known as "cat-scratch fever", I think)
I had Lyme, Ehrlichia, and Babesia, and received a couple insufficient treatments shortly after infection but then none for 6 months, during which I relapsed severely.
For me the most effective lyme treatment seemed to be clarithromycin, 500mg 2/day and amoxycillinb. 3g 2/day. But the sequence is imp;ortant too-- I think the treatment needs to be changed as you go along. I also took a bunch of herbal things.
I wonderered the same thing when I started and after searching around found this great post started by Charlie (Antibiotics Poll) where he set a format for the responses. It's like 4 or 5 page long. You might find it useful.
3 months on Amoxicillin 3000mg. Great response the first 2 months, fatique gone, vision improved neuro symptoms lifted 60%. The last month I would say Im almost worse than before I started- Neuro symptoms being the worst.
Posts: 465 | From New York, NY | Registered: Aug 2005
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posted
IV Rocephin 2 grams/day was the key that turned me back on the road to recovery. Herxing was heavy and I was essentially exhausted immediately after infusion. I had for 3 months.
We watched the liver/white count/gallbladder for issues and all was clear, thankfully, for the 3 months. But I do have pressure in my arm and chest left side as a lasting side affect. Most likely just irritation in the vein from the tube that needs to clear.
We are certain it isn't clotting, again since I don't have any clotting disease, ultrasounds of the line were always clear - no clots, etc.. I think it's great, just need to monitor extremely closely.
Tindamax, 1500 mg/day I give credit for clearing my head cognitively and physically.
Diflucan, 200 mg/day I credit for removal of 90% of my numbness that was left in my hands. I experienced 2 distinct moments of the numbness "washing" away from my hands up my arms and out into my chest and away. Almost spooky.
These are the stars out of a total of 9 antibiotics in 9 months of treatment. Again, I am 90% better today.
I actually drove the car today for the first time since April 2006! (even though I can drive/ I really shouldn't be driving since I still have a vision Nystagmus issue. But, I can do it...
That's my last hurdle to 100%.......Certainly let me know if there are questions.
Best Regards, All, Karl
-------------------- Uncommon inner strength must defy gravity! 5/4/06 MS. Lyme, Babesiosis, Chlamydia Pneumoniae -respiratory infection. 9 mos./9 antis. 85-90% better. Now on Factive, Doxy, Rifampin. Used, Mino, Azithro, Mepron, Rocephin, Tini, Diflucan. Posts: 51 | From CT | Registered: Jan 2007
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
First Ketek and then Factive.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Antibiotics alone won't "save" anyone in my opinion - or at least very few. They likely just push the infections deeper in many cases. I use them, yes, but as part of a larger perspective and program.
If all you do is take antibiotics, the odds are not good.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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What other stuff do you do?
Posts: 310 | From TN | Registered: Jan 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
My doctor says exactly what SForsgren is saying.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
My entire treatment protocol is outlined on my web site listed below. If you have specific questions, let me know. It is on the "My Treatment" page. I don't have all the answers yet either, but am working on it.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
hands down to the evil combo of mepron-zithro-art,without a doubt it was a rollocoaster from hell the first six months;then................ life became "LIVEABLE" again.
Lymster in WA
Posts: 303 | From WA | Registered: Jul 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
IV rocephin gave me my life back in 2001.
I relapsed in 2004 and havent found any oral abx or combos that are able to achieve what the rocephin did VERY quickly.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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