posted
I will post the results for all to use when we lock the survey. This is completely confidential. Thanks
Posts: 422 | From CT | Registered: Oct 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
done!
Posts: 3905 | From USA | Registered: May 2007
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The survey linked in this initial Topic post is being conducted by an independent researcher who has the skills and training to conduct this type of survey. This researcher is also a victim of TBD's. Hopefully the data will be useful to LymeNet users, to the overall Lyme / TBD community, to Lyme and TBD treating professionals and possibly other researchers.
This survey is not sponsored or endorsed by LymeNet. Your participation in this survey is strictly voluntary.
When you click on either survey link you will leave the LymeNet Flash and will be re-directed to a survey web site that is not associated with LymeNet.
If you have any questions or concerns about this survey please address them to the researcher conducting this survey via LymeNet private message (PM) to the author of this Topic.
Batteries not included ... no warranties expressed or implied (joke).
On a personal note ... I encourage all LymeNet users to participate in this survey and hope the data collected sheds some definitive light on TBD's and treatments.
Take care,
[ 15. March 2008, 01:40 AM: Message edited by: Lou B ]
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Something seems wrong; whenI click to put in my dosage it erases my choice of how good the drug was.
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
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bettyg
Unregistered
posted
done
monica, only thing i noticed that you didn't have on here that would have been helpful.
when we WERE on 1 or more of abx, you didn't have in there;
did you see any changes in .... ...
but NOT have NO IMPROVEMENT NOTICED ------------------------------------
and when i was on a med; i showed dosage/length of time vs. was it good/okay.
when i clicked on answers it didn't appear to have done anything except for NEVER USED boxes where a check mark appeared.
posted
Yeah there are limitations for what I can collect this way as with multiple abx. This is the first one so we can have more when we refine it. I will figure out a way to do that next. I will check on the issues you and Tracy mentioned with clicking now. I think everything is working fine now. Thanks
I will post the responses later this week. Not sure how long I will keep it open yet...see how many repsonses we get.
Posts: 422 | From CT | Registered: Oct 2007
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posted
If you want to see the ongoing results you can click the following link. I cannot show the typed in results until the end..like dosage and length of time. I will post that when we close the survey.
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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bettyg
Unregistered
posted
monica, i enjoyed your colorful table of answers so far! amazing how many of us are over 40 and of course; majority have had 5 years easily!!
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posted
I am also blocked from adding new drugs at this point but I will put them on the next one...so keep posting suggestions. Such as Omnicef. And abx combos.
Posts: 422 | From CT | Registered: Oct 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Great idea. I took the survey, but can't recall whether or not I have had some of the abx listed.
I also am still very low functioning but slowly improving. Been on abx since 2003.
Ketek was the first abx that helped with waking up feeling like a truck had run me over..but also could be just from long term abx usage.
Also LLMD is limited on what he can prescribe me due to not having funds to pay out of pocket and insurance denying many of the perscriptions.
Thinking of canceling insurance so I can get meds through drug companies as they will not provide it if I have insurance.
[ 26. March 2008, 09:21 AM: Message edited by: kam ]
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Done Posts: 370 | From NJ | Registered: Dec 2007
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Done.
I wish I would have kept better track of this info....
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
I had the same problem as someone else had. When I put in the dose, it erased my rating on how well the drug has done, just fyi....
Posts: 975 | From California | Registered: Apr 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Monica,
Will you let us know the results?
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Hi Kam You can click on http://tinyurl.com/25az75 anytime to see the bulk results. When I close the survey you will also be able to see the dosage and other comments. 82 responses so far...good.
Posts: 422 | From CT | Registered: Oct 2007
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posted
Haven't done the survey yet but did look at it. One thing I noticed is that the symptoms most associated with babesia--weight loss, night sweats, etc--are not included in the list of symptoms under mepron and malarone drugs.
As someone else mentioned, when you try several drugs over a period of time, it is hard to say just which one helped the most, just that you have reduced the severity and number of symptoms overall.
Good that it asks for length of time after bite before treatment started. That seems to be the main predictor of chronicity.
Posts: 8430 | From Not available | Registered: Oct 2000
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Thanks Monica. Can't wait to see results. They will be posted here?
Tic
-------------------- Adversity is the diamond dust heaven polishes it's jewels with. � Robert Leighton
Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time � all faiths welcome! Posts: 309 | From S.E. Mass | Registered: Apr 2006
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posted
We have 97 so far....3 more Then I will figure out how to do a combo abx survey. This will be toughy.
Posts: 422 | From CT | Registered: Oct 2007
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bettyg
Unregistered
posted
monica, thx for the update! wow 3 MORE NEEDED TO FINALIZE THIS SURVEY!!
HOPE others will take the time to see your post on top of page!!
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1. What geographic region do you live in? # Response 1 Europe but from North East 2 uk 3 Mid-atlantic/ West Virginia 4 Mid Atlantic 5 Mid-Atlantic 6 I was bit in Mid West, but now in North East 7 California, but the tick bit me in Illinois 8 Singapore 9 central east (kentucky) 10 Florida 11 Ireland 12 Austin TX
3. What were you diagnosed with? # Response 1 chlammydia pneumonnae, Cryptostrongylus pulmoni 2 hhv-6, ebv 3 STRAINS, and lyme 3 EBV 4 Rocky Mountain Spotted Fever 5 CMV 6 chlamydia pneumonia 7 mononucleosis 8 Rocky Mountain Spotted Fever and Anaplasmosis 9 in process of testing for others 10 riccketssia 11 Colorado Tick Fever 12 possible babesiosis/bartonella
5. Please rate the following medication in order of its usefulness? CEFTIN # Response 1 21 days after doxy 2 1000mg bd -9mths 3 3 mnths, 500 mg bid 4 500mg 2x day 5 1000 mg daily, 2 weeks on, 2 weeks off for 1 year 6 5 months 7 500 x2 8 500 mg 2X day/5 months 9 12 weeks Rocephin, same thing right? 10 500 mg 2x a day....2yrs 11 don't remember, but it just casyed resistance 12 400 mg 2/day 2 months 13 Generic-whatever Dr C's standard rx is 14 3,000 mg/day X 10 months 15 6 months, IV 2g 16 don't remember dosage for 3 months 17 500 mg 2x for 6 months 18 3000MG BID 6 1/2 months 19 7 weeks, 1 gm. 20 250mg twice daily was on it at least 3 months. 21 off and on 2 years- 250mg/2daily 22 500mg 2 pills 2x a dy 23 Had allergic reaction; don't remember dosage 24 around 3 months, in combination with doxycycline 25 Short time caused headache to intensify
7. Please rate the following medication in order of its usefulness? PENICILLIN VK # Response 1 2000mg for one week 2 Not sure but it was high, at least 3 months 3 3 b-cillian shots 4 just started amox 6 grams a day 5 2months 4x a day =1000mgs 6 very short cour from dentist but noticeable effect 7 I took penicillin much later - it did nothing
9. Please rate the following medication in order of its usefulness? MEPRON # Response 1 Twice a day, two months 2 1 tsp bid for 3 months 3 only 4 weeks not sure yet! 4 3 months 5 2 tsp bd -5mths -no improvement 6 So far, used for 2.5 months. 2 teasoopns/day 7 2 months, 1 tsp bid 8 3 months 9 1 teaspoon 2x's a day 10 2x day-1 tsp 11 6 weeks, 2 tsp daily 12 1/4 tsp 2-3x week. More affects my liver enzymes. 13 1 tsp bid for 5 months 14 750 mg PO BID x 3 months, had 3 relapses so far 15 9 months, 2 tsp, twice daily 16 1 tsp/BID, 7 months and counting 17 1/2 tsp, 1x day, 6 months and counting. 18 1 tsp. 2x day for 6 months 19 2 tsp 2x per day 4 months so far 20 3-4 doses per day, NOT only 2 and x 6 months 21 3.5 months 2x a day spoonful each time 22 1 week, forget dosage 23 5 rounds (5 ml 2x/day) a total of 180 weeks. 24 2 or 3 spoonfuls a day for a couple of months 25 2 3-week courses, for Possible Babesia
11. Please rate the following medication in order of its usefulness? MALARONE # Response 1 not sure 2 500MG TWICE A DAY FOR 3 MONTHS 3 6 months standard dose 4 8 months 5 3 months once a day, had relapse 6 5 months, 1-3 tablets per day 7 100 mg 1x day 5 mths. 8 250/100 mg 2 pills 3x/day for 3 months 9 dose:not sure. duration:2 sequences, 5 week ea. 10 1 year +
13. Please rate the following medication in order of its usefulness? LEVAQUIN # Response 1 500mg 3 mths cycles for past 2 yrs BEST MED 2 2 weeks so far. 500 mg/day 3 12 days 4 500 mg daily for 2 weeks 5 500mg po bid in fourth month 6 500 mg., 12 weeks 7 don't recall 8 500 mg 2X day for 3 months 9 500 mg /day x 9 months 10 3.5months 2x a day forgetdosagehigh thoughhadtendo 11 Don't remember dosage, 4 months 12 500 mg for 4 weeks 13 500mg PO Q D 14 typical IV dose, 4+ months 15 500mg 1 pill a day
15. Please rate the following medication in order of its usefulness? BIAXIN # Response 1 500 mg bid for3 1/2 months 2 500mg twice a day 7m 3 standard dosage about 6wks 4 1-2 years 5 500mg bd - 2 mths 6 Allergic to sulfas 7 1 year, 500 mg bid 8 500 mg 2/daily; 18 mo. PULSED w/doxy 9 6 months 10 500 mg 1 pill 2x day 11 1000 mg daily for 1 year 12 1000mg a day (6 months-twice)-taken with plaquenil 13 filling in the answers that didn't stick last time 14 Biaxin 500 mg BID 15 500 mg, twice daily 16 500 x2 17 BID, 8 months and counting 18 500 q12h, 2 months so far 19 1,00-2,00 mg/day x 2 years 20 2x a day 250mgs each time 21 few days.very harsh on stomach.no time to work 22 used for resp inf- not helpful with lyme s/s 23 500 mg 2x for 6 months 24 2000MG BID 6 1/2 months 25 1 week 500mg
17. Please rate the following medication in order of its usefulness? FLAGYL # Response 1 2-3 months 2 400mg tid pulsed 1 wk every mth. BUT severe herxes 3 Pulsed for one week per month. 4 3 days; terrible herx; STOPPED;don't remember dose 5 500 mg on and off 3 years 6 1000 mg daily for 1 month 7 750MG DAILY 3 DAYS A WEEK 1 YEAR 8 1000mg 5 days a month pulse 9 flagyll 250 BID 10 500 11 I started having heart problems on it - 3 weeks 12 250 mg 2xday 1 month 13 Generic-whatever Dr C's standard rx is 14 500mg daily for six weeks 15 500 mg 4x/day x 4 months, then pulsed x 1 year 16 3 x a day 250mgs each time 17 4 weeks, ?dosage,used for C-Diff from other abx 18 used 5 years ago with pulse therapy-not helpful 19 500 mg 2x for 14 days on off 7 for 16 weeks stil 20 500 mg 2 x per day 5 months 21 500 mg bid - 5 months 22 1500 mg/day 6 weeks 23 250 mg x2 daily; bad reaction after 7 days (twice) 24 1000mg a day x three months 25 100mg QD IV
19. Please rate the following medication in order of its usefulness? ZITHROMAX # Response 1 250mg once a day for three months 2 just started 6 weeks ago 500mg twice a day 3 not sure 4 250mg bid -6mths -no benefit 5 Allergic to it. 6 500 mg bid 7 500 mg 2 months 8 250 mg 1 pill 2x day 9 1000 mg daily, made me very ill to stomach taken o 10 600MG DAILY FOR 3 MONTHS 11 500mg a day (2+ months) taken with amantadine 12 250mg MWF 13 250mg po bid for 8 months 14 Zitromax 250 mg BID 15 one dose of zpak - major major herx - no use afte 16 1/2 of a 125 pill 1xday, 13 mos and counting. 17 750 mg a day 18 500 mg 2x a day....4 months 19 1 BID on and off for 1+ yrs 20 Just started 250mg 2xday 21 Generic-whatever Dr C's standard rx is 22 500 mg daily several months/two rounds tx w/Mepron 23 1,200 mg/day X 1.5 years 24 30 days flagl then 30 days zithromax-pulse treatme 25 500 mg 2x day for 14 days
21. Please rate the following medication in order of its usefulness? BACTRIM # Response 1 800-160 1 1/2 pills 2x's a day on and off for 2 y 2 with mepron 2 x a day 250 a each time 3 2 DS tabs/day off and on for years 4 1000mg a day x 60 days 5 500mg/2daily 6 cant remember 7 1 pill 2x day 800-160 8 2 weeks; not sure of dose 9 1 bactrim DS- 4 to 6 times aday -Works for Babs -
23. Please rate the following medication in order of its usefulness? RIFAMPIN # Response 1 300mg bid -3mths -not as effective as levaquin 2 4 months and ongoing 3 1000 mg daily for 2 weeks 4 300mg po bid for 6 months 5 Rifampin 200 mg per day 6 300-600 mg/day x 6 weeks 7 2 x a day 250 mg each time with minocin 8 300 mg BID for 5 weeks 9 600mg daily 10 300mg 2 pills 1x a day 11 2 500 mg 2x daily Starting 2nd month
25. Please rate the following medication in order of its usefulness? CIPRO # Response 1 can't remember 2 po bid for 10 weeks 3 21 days 4 250 2x a day 5 500mg 2X/day for 30 days 6 500 mg twice daily for 2 months 7 1000 mg for 1 month on 2 seperate occasions 8 1 -500mg - 2X aday- did help but not much - 9 Strong herx on first dose for UTI, 10d, need more.
27. Please rate the following medication in order of its usefulness? TETRACYCLINE # Response 1 KETEK? was my favorite think it is what got me bet 2 1 year, 750 mg bid 3 1 pill 4x day, don't remember the dosage 4 200MG TWICE A DAY FOR 1 YEAR 5 1500mg daily; 6 months (twice) 6 500mg TID approximately 2 years into treatment 7 1500 mg daily 8 Adoxa-high dosage 9 2000 mg/day for months at a time 10 400 mg 5 months 11 Used Doxycycline, 200mg/day, then 400mg/day, 6 mos 12 Doxi 600mg aday for 2 years - 13 Doxy 2 500 mg 2xdaily
29. Please rate the following medication in order of its usefulness? SUPRAX # Response 1 whatever the regular dose is 2 dont remember 3 don't remember
33. Please rate the following medication in order of its usefulness? Tinidazole # Response 1 500mg tid -3mths -not as effective as flagyl 2 1000 mg daily, 2 weeks on, 2 weeks off - 1 yr 3 250mg po tid for 6 months 4 250 mg 2X day, 2 months 5 250 mgs 2 x a day 6 500 mg 2 x for 14 on 7 off for 2 weeks 7 for 4 months 8 1000mg 3 times a day so far for 4 weeks 9 2G/day 10 500mg? twice a day 11 Six months 1000mg a day 12 1pill 2X a day - not sure of dose
35. Please rate the following medication in order of its usefulness? Plaquenil # Response 1 200 mg day for 3mos 2 2x day 4?years 3 200 mg bid 4 1 pill 2x day with another antibiotic 5 200mg po bid for 8 months 6 plaquenil 100 mg? BID 7 BID 8 200 mg 2xday 9 250 mg 2x a day....4 months 10 1 BID for 18 months 11 Just started 200mg 2/day 12 can't recall dosage, not high 13 200 mg, unfortunately medication reaction 14 300 mg 2x four months 15 200mg 1 pill 2x daily 16 2xday, all drugs in combo-don't know which works 17 200mg BID 18 200 mg 2xday 6 mos 19 don't recall 20 cant remember
37. Please rate the following medication in order of its usefulness? MINOCYCLINE # Response 1 100mg bid -9mths -best lyme med 4 neurolyme 2 100 mg 2x's daily 3 1 pill 2x day 4 100MG TWICE A DAY 5 100mg po bid for 12 months 6 200 mg 2x a day 7 100 mg 2x a day....2yrs 8 100mg three times a day for neuroprotection 9 again, I take so many hard to say which one helps 10 200mg/3/daily 11 cant remember 12 1 -100mg-2X aday 13 made headache worse
39. Please rate the following medication in order of its usefulness? ROCEPHIN # Response 1 3 months IV, 2 grams 2 2gms a day for 6 wks the last tx 2003 3 2g bid pulsed 4 days/wk -2mths 4 2 grams/day for 10 weeks 5 once a day- longest treatment was 8 1/2 months 6 2Gms IV 5 days/week for 11 1/2 months 7 2 Grams IV daily for 4 months 8 2 gm per dat iv - 2 weeks 9 12 weeks 2 grams day 10 10 days before gallstones 11 2g 2x a day 4 on 3 off..4months 12 2grams twice a day for one month; dr wanted 3 mos 13 2 grams per day X 4 months 14 6 months IV 15 2mg 2x day for 4 on 3 off still on 17th week 16 2 gr 1x/day for a total of 10 weeks 17 2 grams QD 28 days 18 2gm 7 weeks 19 2g daily 3 months 20 2 g BID 5 days a week for 6 weeks 21 6 weeks IV x1 daily 22 2 grams daily 9 mos + 23 500mg QD IV 24 5 months 2 grams 25 3 weeks
41. Please rate the following medication in order of its usefulness? DOXYCYCLINE # Response 1 10m 200mg -300mg 2 100 mg twice day for 1 mo 3 4 weeks 4 30 days, 2 a day. Think 500 mg 5 not sure 6 200mg bid -1 yr -(1st tx yr) 7 100 mg tid 8 100 mg twice daily [200] pulsed for 20 mo. w/biax 9 had too many stomach problems 10 200MG TWICE A DAY FOR 1 YEAR 11 200mg a day - not useful 12 200mg daily 4months 13 200mg/day switched to Mino after GI bleed in 8 day 14 doxycycline 100 mg BID 15 200-300 mg per day 16 200 mg/BID 17 100 mg 2X day, 4 weeks 18 50; 3 x per week. Currently on; less than 1 month 19 4 months 400 mg a day 20 1 BID then 1 TID (300 mg?) for 1 1/2 yrs 21 200 mg a day 1 month 22 200 mg q2h; 4 months 23 Adoxa - high dosage 24 400mg a day for six wks; hated it but effective 25 400 mg/day x 3 months
43. Please rate the following medication in order of its usefulness? AMOXICILLIN # Response 1 too long ago don't remember benefits 2 3 months 3 can't remember 4 1 500 mg 2x day, also up to 3 grams daily 5 500mg a day for 6 weeks - it was ok 6 2500mg po tid for 2 months 7 6 months, 3000 MG a day 8 7 grams a day 9 months 9 Just started 6 grams a day 10 4-5 months at 3000mg per day w/1500mg probenecid 11 8,000 mg/day X 8 months 12 500 mg 2 X for 2 months 13 1500 mg/day for 3 months 14 500 mgs 2 x per day (with biaxin) one year still o 15 3-6G/day off and on for years 16 100 mg qd, 7 days 17 1year, 3 grans 2/day 18 500 mgs 2x daily 9 months 19 6000mg daily 2 mos 20 500mg/2daily 21 up to 6 grams, 1+ year 22 6 months 4000 mg 23 3 x500mg aday - helped some 24 6g/day, around a year and a couple months total. 25 not useful, tried, but didn't help at all. 3 weeks
Posts: 422 | From CT | Registered: Oct 2007
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bettyg
Unregistered
posted
thanks for your results monica!
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Brain and vision are not working well enough to come to a conclusion on this.
What abx helped?
Did they help?
How did they help?
I know with me lyme symptoms come back when I am off abx...but am still pretty low functioning while on abx.
Wondering if it is like valley fever and diflucan.
The diflucan keeps the fungus from running a muck in the body but doesn't actually heal a person of valley fever.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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