Topic: what's the first antibiotic for late stage lyme?
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
if you have late stage or chronic lyme, like me, what's the first antibiotic that a doc will give you?
one doc gave me biaxin and i herxed like mad but he wouldn't give me anymore and my gastro gave me flagyl, which i really liked, but again, wouldn't give me more than two weeks. cause they didn't think i had lyme...rats...
ann's doc gave her amoxy only twice a day, but i've heard others say that biaxin and difulcan is the best treatment for late stage...
confusing...i thought amoxy was no good for late stage...
i don't want to hurt my chances with this dr. w. should i just answer questions and not say anything about antibiotics?
i'm so scared he won't take me, i'm almost sick at my stomach, afraid i will blow it....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
biaxin & plaquenil are a good start
IV is probably the best way to go...scary, I know but it really kick's late stage Lyme's butt.
posted
I had lyme for 10 years before I found out I had lyme. Rocephin was my magic drug.
I also did plaquin, septra, and something else that I can't remember (typical). It's suposed to be a triple threat on lyme. Sometimes I couldn't handle the septra so I pulsed with zithro-you feel like **** but I guess it works?
Good luck
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
I'm on amoxicillin for late stage Lyme and it's working. Taking 500mg 3x a day. Not sure if it's curing me but my symptoms are rare and mild. If I take 1000mg 3x a day I get a pretty good herx, so it's definitely killing the Lyme. Doc thinks 1000mg is toxic so I generally stick to 500, pulsing a 1000 for a few days now and then.
I also did well on 300mg of Doxy but the sunburn issue made me stop last month.
My doc's theory is after a couple months of amoxicillin, when I go off if I get sick again probably time to try IV.
If you can tolerate orals and you feel better on them, always a good place to start.
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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posted
After a year of oral antibiotics I started Rocephin IV. I was probably at 60-70% prior to Rocephin IV. After almost a year on it I am for sure at 90% back to feeling well.
Still have some lingering myoclonus (body jerks). Not sure I will ever rid myself of them. I feel like my old self again and the impending feeling of dying is long gone.
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
geez, a year on iv? what do you have to do? go to the ER or does the doctor do it in his office?
do they have rocephin pills? after that last episode with the er and my veins, i don't do let anybody near me with needle.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Rocephin is Ceftriaxone....Ceftin is the oral form. However, you will not get the same penetration throughout your body.
I was on IV rocephin and as much as the idea of the PICC grosses me out today, I was sooo sick at the time I could have cared less what they did to me. I believe it helped get me over a hump but I've been on orals since the IV (9 months) and have seen steady improvement.
Posts: 561 | From mass | Registered: Jul 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I was put on Cedax,oral abx, one step down from IV rocephin.
-------------------- "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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posted
KS - Just FYI ceftin is not the same as rocephin. Rocephin is ceftriaxone, and ceftin is cefuroxime. They are both in the same family (Cephalosporins).
Ceftin is a second generation and rocephin is a third generation cephalosporin.
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i read about the rocephin iv's and just thought they were done at the doctor's office or at the ER.
i didn't understand that you can do them at all yourself. that would scare me to death.
after hearing what my mom went through with picc lines, stomach tubes, feeding tubes, etc., i just couldn't do that. course they saw you don't really know what you can do when it comes down to it, but i don't think i could.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I am skipping around w/ Abx. I started w/ zith, but b/c I was on erythromycin for years prior for acne. Dr figured anything that could have been killed by eryth was already dead. Zith w/ nystatin is my current standby.
I still work full time, and I herx too terrible on Biaxin, and he said for now Flagyl will do me the same way.
My stomach was shot, so I slacked off for a month, just doing Samento. Trying to detox. Detox seems as important as the kill. My spleen is swollen, usually meaning I have EBV flaring again.
I am just a plague!
Your treatment needs to be tailored to you specifically. There are some areas that are treated better w/ certain drugs, depending on where you are having the biggest issues at the time.
Neuro lyme responds better to one drug, say than the ppl that have joint pain first and foremost, etc.
Just try not to worry too much. There are good days, and bad days, but EVERYDAY, we are here for you!
Bunny
-------------------- 4 strong winds that blow lonely, 7 seas that run high.
All those things that don't change Come what may. Posts: 103 | From Dallas/ Fort Worth. TX | Registered: Dec 2007
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posted
I was ill for 27 years before being diagnosed with Lyme and babesia. I had alot of neuro symptoms (brain fog, word searching, migraines,etc), among other things.
The first medication I used was Rocephin, IM, at 250 mg/day. I was terrified of needles, but I learned to self-inject and it wasn't difficult or painful. After a few weeks my doctor added Flagyl and Zithromax.
After 17 months of IM Rocephin (never used a higher dose than 250 mg/day), was able to substitute Omnicef (oral) for the Rocephin.
Am now treating Babesia with Malarone and Zith. I feel really well most days, 90% improved, and have only been in treatment for 22 months. I've been amazed at how quickly I'm getting better, and am very grateful.
Kaitlin
-------------------- Kaitlin Posts: 67 | From CO | Registered: Apr 2007
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posted
Rocephin IM seems a good optoin...next to impossible to get IV help in our area, especially with any coverage....
I dont know HOW I am going to stick myself...but I am willing to do anything right now...
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
I read all over, and no one said Doxycycline. (msp?) That is what I am on for 21 days,2x a day. I did not go to a lyme specialist, however this is the second active lyme case i have had this year. Both times I have had doxy. hmmm Now I am worried that I am taking the wrong stuff.
Posts: 22 | From N.East CT | Registered: Jun 2008
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posted
No one seems to be taking the antibiotic I was given first either, but I hope my doctor knows what he is doing.
I have been sick for 3 years and was put on Cleocin, Clindamyacin. So far im on day 5, I did three days of 300mg, yesterday 600mg and then today im going to 900mg and staying at 900mg for 3 weeks.
So far I am feeling aches and pains in my muscles, is this a typical ABX symptom?
Like my neck and between my shoulders are sore, but I haven't really done anything physical to cause this.
Anyway, after 3 weeks of 900mg a day of Cleocin he talked about adding another antibiotic, not sure which one but im hoping its one of the many discussed in this thread.
Posts: 59 | From Arizona | Registered: May 2008
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tailz
Unregistered
posted
I'm beginning to think I need IV Rocephin again. I felt dizzy and almost threw up again today. I haven't had a cephalosporin is 2 years.
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so is cefuroxime axetil just as strong as ceftin, and is ceftin just as strong as rocephin?
are all three of those drugs just for lyme or for coinfections as well?
i thougth i was the only person on cefruoxime because i never see it posted here. that is the only drug i am on right now. but i am only being treated for lyme.
my gut instinct and heart flutters tells me that i have babs as well.
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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quote:Originally posted by nyjohn: i'm confused...
so is cefuroxime axetil just as strong as ceftin, and is ceftin just as strong as rocephin?
are all three of those drugs just for lyme or for coinfections as well?
Cefuroxime axetil IS ceftin. Same thing. Ceftin and rocephin are two different drugs, so no they are not the same strength. I believe both are administered in different milligram doses. They are both used for lyme disease.
Ceftin is often taken orally and rocephin is taken intravenously or intramuscularly. For lyme disease, high doses of ceftin are necessary. Both have decent efficacy against the lyme disease bacteria. Different people will have different results with different drugs.
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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posted
I went through a lot of antibiotics. I had lyme for about 6 years before diagnosed.
Started on Amoxy, then Biaxin, Omnicef, Flagyl, Doxy, and now IV Rocephin.
The idea of doing IV was incredibly scary to me, but it's just amazing the crap you can get used to. I'm actually doing my IV drip while I'm typing this, and have been known to hang a bag from my kitchen ceiling while I do the dishes. It's just sort of become part of my life at this point.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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posted
Randi... There are so many options in treating Lyme. Some LLMDs start with orals to ease into treatment. There are many combinations that can be used.
Other LLMDs think it's best to start with the IV because its a stronger treatment.
Since you mentioned a bad experience with your veins in the ER, you should be sure to tell your Dr what happened if he recommends IV. He needs to know if this would put additional stress on you. Generally speaking, it's best to eliminate as much stress as possible.
That said, I want to assure you that IV is not that difficult and with proper instructions, I'm sure you could do it.
A quote I remember is "Our greatest fear is the fear of the unknown." Learn what you can about how IV treatment is done. Haven't checked, but the "Newbie Links" probably have general info about it.
I've had orals, IV, and Bicillin shots. Your Dr will probably explain his recommendations and/or options with you.
Another thing, any time you're going to have blood drawn, be sure to drink lots of water beforehand so that your veins won't cause problems. I've learned this from experience.
Always keep in mind - You have a caring group here on LymeNet, always willing to help.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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quote:Originally posted by C.M.L: I read all over, and no one said Doxycycline. (msp?) That is what I am on for 21 days,2x a day. I did not go to a lyme specialist, however this is the second active lyme case i have had this year. Both times I have had doxy. hmmm Now I am worried that I am taking the wrong stuff.
Randi asked about treating late stage lyme, not a recent case.
However, CML, since you've got a reoccurence, you MIGHT be considered chronic at this point. I say that because you were likely not adequately treated the first time. (per the info you gave in General Support)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I started on Amoxi/Biaxin for late stage lyme for over a year, now current Bicillin/Biaxin.
It depends on co-infections, bands positive on the WB ...etc.
If you "herxed" on Biaxin...that is a sure sign of LD.
Doxy and Mino are now being found comparable to IV for late stage ld and neruoborellosis according to Pubmed abstracts.
Also LLMD's are reporting high success rate w/Azithro/Flagyl together.
posted
I have chronic lyme and won't be seeing LLMD till Aug. The doc I have been seeing had me on doxy and I have enough to last till I go.
So far it has done nothing for me (approx.5mos.). Maybe I shouldn't keep taking it till I see my new doc?
Posts: 847 | From upstateNY | Registered: Dec 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Ketyl, ask your doc for another antibiotic. Doxy has done its job for you. There's so many abx to use. My Lyme doctor rotates them as needed.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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Dawnee
Unregistered
posted
I've had Lyme for probably 20 years, and was reinfected in 2003. While I was waiting for my LLMD to put me on Abx my regular dr put me on Amox. 950mg twice a day for 10 days because I was afraid I was getting a sinus infection (actually, I just wanted abx!) Anyways... because of that abx my CRP went from 57 to 11 !!! Which is awesome. LLMD sure was pleased.
I herxed on that too, even woke up to my left leg paralyzed for a bit.
So LLMD put me on Zith 250mg a day and Diflucan 100mg every three days for the first month. Now I'm on Zith 500mg on even days and 250mg on odd days, with the Diflucan every other day. Ramping me up slowly because he says I'll end up in the hospital otherwise.
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posted
What about Tigercycline? Our LLMD's been talkin' it up recently. Seems to work wonders in late stage neuro lyme.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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