Antibiotics Poll - LymeNet Flash

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Antibiotics Poll (Page 1)

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Author	Topic: Antibiotics Poll
charlie Frequent Contributor Posts: 1392 From: Texas Registered: Oct 2000	posted 17 December 2000 01:26 Hey gang, I've got a great idea for another poll; it has become evident that one size doesn't fit all where Lyme is concerned. I think it would be useful to know what abx we've used for what type of Lyme and with what success. Lets stick to antibiotics for now. We can do another poll for pain meds or holistic remedies if you want. Here's the format I thought would be easiest to use: Type of Lyme; arthritic, neuro, cns, ect co-infections abx used in descending order of effectiveness,spectacular, good, useful, poor, worthless. plus any comments. Sound like fun? Here goes Type: arthritic with some peripheral neuro involvement Co-infections: Don't know Antibiotics used/Results SPECTACULAR: Bactrim VERY GOOD: Ampicillin(for arthritic symptoms) Tinidazole/Biaxin combo Cipro or Moxifloxacin(a newer quinolone) Amoxicillin USEFUL:Tetracycline(maintenance only) WORTHLESS: Doxy(might as well have taken aspirin) See how easy...maybe we can get some idea of what to use to attack different types/stages of infection. Worth a try. Charlie [This message has been edited by charlie (edited 17 December 2000).] IP: Logged
rlhc Frequent Contributor Posts: 44 From: Registered: Oct 2000	posted 17 December 2000 11:10 Type - cns Co-infections - Don't know (tested negative) Antibiotics used/Results IV-Rocephin - good - has helped to stabilize my husband;however, no improvement. Ceftin/Zithromax - good - caused a herx and decreased fasticulations. Doxy - no help what-so-ever (My husband was originally dx'd with ALS in 6/99 and has only been receiving abx therapy since Sept. of 2000.) IP: Logged
pb Frequent Contributor Posts: 557 From: IN - USA Registered: Oct 2000	posted 17 December 2000 16:18 Type: ? - Neuro., CNS, beginning Arthritus Co-infections: 2 types Ehrichliosis, Babesia Antibiotics used/Results Doxy for almost 2 months/slight improvement in memory -- not sure about whether swelling is going down on joints Son's: Type: ? - Neuro + Doxy for 1 month/improvement in eye involvement IP: Logged
Monica Frequent Contributor Posts: 1371 From: Somerset County, NJ Registered: Oct 2000	posted 17 December 2000 20:25 Type: arthritic Co-Infections: None NEVER TESTED POSTIIVE ON ANY TEST Medications: Doxy - 300mg day for 3 1/2 months - Immediate improvement, but quickly plateaued. Zithromax - Improvement, but plateaued later than doxy Biaxin/Suprax combo - immediate improvement (getting better all the time) IP: Logged
lymemom Frequent Contributor Posts: 42 From: Il Registered: Oct 2000	posted 18 December 2000 00:18 for 14 year old daughter: 1.Type - early onset; treated when bulls eye present approx 3 weeks after bite. symtoms were rash, muscle aches and tired. 2. coinfections - none 3.doxy - 200mg/day - excellent - felt better in 2 days amoxicillian - 1500 per day - worthless - had no impact 4. REST in early stages of infection and treatment are esxtremely important. don't think daughter would have gotten better so fast is she had kept up her physically demanding and exhausting schedule. IP: Logged
ShelleyA Frequent Contributor Posts: 568 From: Bel Air, Md Registered: Oct 2000	posted 18 December 2000 10:46 Type-cns,neuro,arthritic, muscular, visual etc. etc. (everything!) Co-infections-Ehrlichia/Babesia Tx-for Babesia at present (no active lyme) Zithromax/Mepron (5 months)-improvement in 3rd month with greater improvement in 4th(enough improvement to notice) Am on 5th month. Prob. infected with the above in 1963 so.......... IP: Logged
bobdavis Frequent Contributor Posts: 402 From: Western NY Registered: Dec 2000	posted 18 December 2000 12:34 Hello there, I've been gone a long time. This is the first Lymenet has come up on my computer in months! Back to the question. Lyme for 23 years, ALL tests negative. Known tick bites, rash and secondary rash. Doxy, only works while on it! Flagyl, very effective. Chloroquine Phospate, does miracles! I stay "well" for years after taking it. Only use it while in Malaria countries. (Likely Babesia coinfection?) Currently taking "tonic water" (Quinine) with some improvement. Docs are no help! IP: Logged
CarolC Flash Member Posts: 20 From: Groton, CT, USA Registered: Nov 2000	posted 18 December 2000 14:11 Type: Arthritc w/ some peripheral Co-infect: Don't know Antibiotics: 200 mg per day Doxy for 6 weeks, great improvement - think almost done, had Lyme for 6 months Amoxy for two weeks; no response at all Would love to know what antibiotics worked for patients with later diagnosed Lyme (1 year and out of infection undiagnosed) and if different from antibiotics that worked for those diagnosed and treated immediately after tic contact! IP: Logged
ponytail Frequent Contributor Posts: 573 From: Huntsville, Texas Registered: Oct 2000	posted 18 December 2000 14:30 Type: Late Stage Chronic w/ mostly neuro symptoms (manageable pain in joints/neck) Co-infections: Don't know Antibiotics used/Results: SPECTACULAR: Nothing so far VERY GOOD: Zithro/Flagyl combo - helped w/ pain and neuro - had some very bad herxes USEFUL: Zithro by itself - began noticing some improvement w/ congnition - Dr. discontinued after 8 weeks WORTHLESS: I'm not sure I'd term Doxy as worthless, but I noticed no improvement while on it for 6 wks - if anything, I've had more gastric problems since. Recently started IV Claforen (7 days today) - can't say one way or the other yet. No major herx so far - just basically feeling very tired and fluey. IP: Logged
Deb_Shea Frequent Contributor Posts: 471 From: Lanark, ON Canada Registered: Oct 2000	posted 18 December 2000 18:11 Type of Lyme; Type: treated 21 days after bite; still had rash and severe symptoms Co-infections: Don't know Antibiotics used/Results SPECTACULAR: VERY GOOD: was only on Doxy (28 days) and it at least got me out of bed and moving around USEFUL: WORTHLESS: IP: Logged
Mike H unregistered	posted 19 December 2000 04:34 Type: Neuro 5/6 years, almost every symptom imaginable, heart, bladder bla bla bla. Co-infections: Don't know Antibiotics used/Results SPECTACULAR: Kefzol. Currently on 4 grams a day IV. 500 mg a day starting almost killed off all anxiety symptoms. Great "calming" effect on body after a few weeks of 1 gram kefzol. Seems to really work at calming the super-hyped central nervous system caused by lyme. Walking has improved MAGNIFICENTLY, along with brain fog, pain ect. Super sensitivity to buzzing, lightening, sounds and lights GONE. VERY GOOD: Tinidazole - Energy booster, the "pit bull" of antibiotics for me, gets wha the IV meds don't or can't. USEFUL: The only useful antibiotic for me is one that works very good or better. WORTHLESS: Amoxx orally , 1500 mg a day for several months. Had no luck with this. IP: Logged
Turbyn Frequent Contributor Posts: 110 From: Alabama Registered: Oct 2000	posted 19 December 2000 18:35 TYPE: Neuro. Got abx treatment within 8-10 days of bite and 1 day after bull's eye rash. Treated with doxycylene for 5-6 weeks - then zith/flagyl going on now for 7 months. Hoping to be cured in 2001 CO-INFECTIONS: ? (I hope not) Antibiotics used/Results: SPECTACULAR: None - To meet this criteria, I would be cured by now VERY GOOD: Zithromax (600mg 3x a week) and Flagyl. (Orig. 1000mg a day, now down to 250 mg a day) This combo has been very easy to take - no nausea. Has greatly helped twitches, numbness, heart rate, and insomnia. USEFUL: Doxycyclene. First and only drug I could get until I got an appt. with LLMD. Family doc was willing to give me 400mg a day, but is VERY hard on the stomach. Nauseated all the time. Plus, had to deal with sunburn just from driving to and from work. Seemed to help with neck stiffness and aches but only mildly improved tingling and numbness. Turbyn IP: Logged
sas Flash Member Posts: 16 From: ohio Registered: Nov 2000	posted 20 December 2000 21:28 Type of Lyme; arthritic, neuro, cns, Antibiotics used/Results VERY GOOD: Dynabac/Levaquin with a Plaquenil kicker This brought me out of the fog. USEFUL: Biaxin worked for a short time IP: Logged
MADDOG Frequent Contributor Posts: 2004 From: Ohio Registered: Oct 2000	posted 20 December 2000 21:43 Hi,Stage one,no treatment.Stage two,Aurthur Rightus,rocephin stoped it.Back pain,cipro and 115 degrees in Nebraska,helped it 90%.Stage 3, neuro, tinidazole and doxy saved my life.Weight loss,was stopped by micro silver bullet,-(colodial silver).Grapefruit seed extract killed yeast infections. MADDOG IP: Logged
MADDOG Frequent Contributor Posts: 2004 From: Ohio Registered: Oct 2000	posted 20 December 2000 21:48 Hi,I forgot,Amox.had no results worthless.MADDOG IP: Logged
Liebekim Frequent Contributor Posts: 624 From: Darien, IL USA Registered: Oct 2000	posted 21 December 2000 15:39 Type: Muscle problems, central nervous system, some arthritis, neuro. Spread quickly since I was on steroids. On antibiotics finally after 40 days or so. No rash. Co-infections: Babesiosis Antibiotics used/Results SPECTACULAR: Mepron for Babesiosis (muscle pain and headaches gone) VERY GOOD: zith IV 750 mg daily/tinidazole 4 days a week at 1500 mg (pulsing tini reduced twitching, body aches) USEFUL: WORTHLESS: Minocin orally and zith orally. Tinidazole early on was bad. I had too much bacteria in my system and I just kept herxing more and more. After the zith IV for 2 months, I tried tini again. Has been great! IP: Logged
HaplyCarlessdave Frequent Contributor Posts: 3748 From: ithaca, NY, usa Registered: Nov 2000	posted 22 December 2000 12:37 Type of Lyme- low grade intermittent fever, arthritis, burning neck and shoulder pain, tiredness, intermittent chest pain. Lots of other stuff... antibiotics taken: Fwo courses doxycycline, 100 mg 2/day for about a month. For corse 1: I hadn't had anything but tick bites, one with a rash. I had no adverse reaction. For course 2 (after I got sick 3 months later) the fever went away, but I felt pretty bad until 4th week- then some improvement but not at all complete resolution. 3 weeks later fever came back, joint pain has worsened since then. (Now I'm antibiotic-free, doctor-free, and still almost surely have Lyme....) Dave S. Since this popped back to the head of the list, I'll update: Finally found a good doc, albeit very far away... tested positive for Lyme, Erlichia, Babs, started Doxy at much higher dose, added Ceftin. I think the bugs might have gotten resistant to doxy- didn't notice any herx, but I was also taking celebrex which made it hard to tell, since it's very effective pain med for arthritis-- but it had nightmarish GI effects. Had to stop meds for 2 days, now I've started doxy and ceftin again. So far the jury is still out. Type of Lyme: probably would be considered "stage 2" at this point... Co-infections: Erlichia, Babesiosis Antibiotics used/Results: SPECTACULAR: To be discovered, HOPEFULLY!!!! UPDATE-spectacular has now been discovered-Biaxin 1g/day with amox 6g/day! GOOD: grapefruit Seed Extract and Olive Leaf Extract. (sent the bugs "underground"...) "garlicin" is also good. USEFUL: Doxy helped alot at first, but didn't have high enough dose, apparently. But this time around it's not yet clearly helping! ceftin with doxy helped a bit. TOO EARLY TO TELL: Ceftin ( just started) WORTHLESS: none, as far as antibiotics go. 9/01update-since May I've been on biaxin/amoxicillin. With doxy and ceftin, got 20% back. Since switching to Biaxin/Amox I'm 90+ % back. dose: 3g twice daily amoxicillin, 500mg twice a day biaxin.- Need to take alot of various supplements to manage GI side effects (psyllium, yarrow,etc.) I also am on GSE (grapefruit seed extract, OLE (olive leaf extract), garlicin (garlic pills), "nutrijoint" capsules, and lots of vitamins. DaveS [This message has been edited by HaplyCarlessdave (edited 16 September 2001).] IP: Logged
Kyriaka unregistered	posted 22 December 2000 13:07 Type Of Lyme: Nervous System, Nerve damage specifically to the bladder tissue. Co Infections: None SPECTACULAR--Zithromax/Flagyl VERY GOOD--Amoxi/Probenecid USELESS--Doxy (severly allergic) IP: Logged
gisells2500 Frequent Contributor Posts: 349 From: germantown, MD Registered: Nov 2000	posted 22 December 2000 20:41 Type:chronic? CNS co-infections: don't know Antibiotics used WORTHLESS. 300 MG DOXY (only ABX ) maybe trying Bactrim 800mg Very Good: Hoping Rocephin 2 grams might due . 8th week Some improvement but got NEW symtoms! Spectacular:NONE [This message has been edited by gisells2500 (edited 08 April 2001).] IP: Logged
kathie santomero Frequent Contributor Posts: 43 From: ft. myers beach, fla. Registered: Jan 2002	posted 22 December 2000 21:34 Type of Lyme; arthritic, neuro Type: arthritic with some peripheral neuro involvement Co-infections: Babesiosis Antibiotics used/Results SPECTACULAR: Flagyl/Zithromax & Mepron VERY GOOD: Ceftin/Probenid USEFUL: Doxy - only intitially & Rocephin [This message has been edited by kathie santomero (edited 22 December 2000).] [This message has been edited by kathie santomero (edited 22 December 2000).] IP: Logged
lgoudie Flash Member Posts: 16 From: Aptos, CA, USA Registered: Oct 2000	posted 02 January 2001 22:55 Type: fatigue with some peripheral neuro involvement, brain fog, dizziness, occasional arthritic flares. Co-infections: Babesia, Ehrlicia Antibiotics used/Results SPECTACULAR: Bactrim (symptom free now after 2 1/2 years on various abx, and I had treatment from within a week of the bite) VERY GOOD: Mepron (with Zith & doxy) (for the babesia). Not sure how necessary or useful the zith & doxy were in this case. USEFUL: IV Rocephin (for early treatment) 2 weeks of doxy got rid of the EM rash, but was useless after that. The rocephin cleared some of my very worst symptoms. WORTHLESS: Doxy, Zithromax, Flagyl? (might as well have taken aspirin) NOT SURE: Cholestyramine (Questran) for toxin cleansing. I went through this regime while also taking bactrim. I had bactrim before and after the cholestyramine, and suspect the benefits are largely to do with bactrim, but I can't say the cholestyramine didn't help. IP: Logged
Nisi unregistered	posted 07 January 2001 05:13 Type: Neuro,arthritic, 1 month IV Rocephen, helped back pain, but made all my joint pain flair in a big way.Did help brain fog. 3 months doxy, hasn't done much. Waiting to see LLMD. IP: Logged
Jo Anne from Canada Frequent Contributor Posts: 429 From: Registered: Oct 2000	posted 07 January 2001 11:52 Type: Cognitive/psychiatric/fatigue is biggest complaint at present, weak/painful knees are worst physical symptom, but they've never been diagnosed. Co-infections: Don't know Antibiotics used/Results SPECTACULAR: Still looking for this drug. VERY GOOD: Still looking for this drug. USEFUL: Doxy, Rocephin IV. Doxy gave me tremendous improvement for the first 4 weeks, then instability/deterioration after that. Rocephin IV gave me some improvement the first two months, but badness the third month. WORTHLESS: Tetracycline REMAINS TO BE SEEN: Flagyl + amoxil + probenecid. After 3 months, minor improvements seen. IP: Logged
Hopeful Frequent Contributor Posts: 36 From: Newark, De USA Registered: Dec 2000	posted 07 January 2001 14:59 Late Stage Chronic/Neuro, CNS, visual, tolerable arthritic pain neck, hands, feet Co-infections: results pending Antibiotics Rating: Spectacular: haven't found it yet Very Good: haven't found it yet Useful: Rocephin IV...helped with fogginess and aching...the rest remains the same Worthless: Doxy [This message has been edited by Hopeful (edited 07 January 2001).] IP: Logged
once bitten unregistered	posted 07 January 2001 15:34 type: cns, eith major neuro involvement, eye, brain some joint symptoms. Onset was profound fatigue with all symptoms of narcolepsy. spectacular: 7 months of zithro with flagyl very good: zithro, biaxen with plaquinal usefull: rocephin IV, biaxen worhtless: tetracycline, doxycycline IP: Logged

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