posted 03 July 2002 23:07               

Most people are posting the state they are in. In the reading to date I've seen many references to there being over 100 strains of lyme in North America. If you had those strain names pinned as flags on a map, and overlaid a map from postings as to what meds worked killer, I wonder if you would see a correlation between meds/strain/geography?

Anyone need a project?

posted 04 July 2002 02:22               

coinfections unknown.

Did long IV ..definitly saved my life...and on tetracycline orals
for last two years. Occassionally try
others in addition

Severe progressive arthritis, much sinus
probs leading to complete loss of sense of smell, chronic fatigue, memory loss..and memory and concentration probs and occassional bowel motility disorder and psoriasis, sleep problems, mood swings and
almost everything on burrescano list at
some time in the past.

[This message has been edited by primcol (edited 04 July 2002).]

posted 04 July 2002 07:51               

Co-Infections: Bartonella, not tested for others.

posted 14 August 2002 11:40              

Began treatment 8 days ago (8/7/02) on Minocin. First 3 days, almost complete relief of all symptoms. 4th day, light herxing began. 8th day, heavier herxing. Dizziness is major side effect / herx symptom since day 1.

Hope this works. Keep this poll going! Need info. for the future!

posted 14 August 2002 11:52            

Evidently I was infected July, 2001. No rash, never saw tick but was in the great northwoods of WI.

Type: Nause, gall bladder pain, FATIGUE, twitching, memory loss, interrupted sleep, numbness, joint pain, increased sensitivity to smell, thyroid failure,adrenal gland failure...
Finally... found LLMD Hofmann Estates Il
Tested positive Western Blot

Co-infections neg so far still testing

Treatment June 2002 4oo mg doxy/day
July 2002 400mg doxy/day 500 mg flagyl/day
many supplements

I can't rate my treatment yet. Herxed twice now, that first one was horrible, last one bad but not AS bad.

Good luck everyone!

posted 02 April 2003 15:49               

coinfections - had the one that starts w ech
(sorry i cant spell)

SPECTACULAR - (briefly then i plateau)
rocephin iv, flagyl , vantin, zinthro iv

GOOD (stabilizing) - bicillin injections zinthro oral

POOR - biaxin

USELESS - leviquin (sp?) amoxicillin i got worse!!
doxy - couldnt keep it down

posted 01 May 2003 05:06               

doxy + ceftin

Flagyl +???

biaxin +

levaquin

cipro

minocycline

I can't even remember all the combos and when they were given...

Every so often, I look up the antibiotic I am on and find different meds others have tried with it. Then I take the list and ask my doctor to prescribe them to me. Doesn't always work, but I feel that way, that I am involved in my treatment. And he does listen to me.

posted 01 May 2003 08:15               

Tick bites, one with with circular rash, from ticks near Brigantine, NJ.

1 week later, went to ("regular") doc, was put on 6 weeks doxycycline 200 mg/day.
No symptoms then, other than rash, that I recall.

2 months later, got very sick- high fever, joint pain, muscle pain, swollen lymph nodes, went back to doc, another course of doxycycline, same dose. No effect for 2 weels, then got worse ("herxheimer reaction"), then a little betterafter 3-4 weeks. Then the pills ran out.

Immediately went downhill again. Had more tests, still ...'negative'... (yeah, right) for lyme, they told me that I had some kind of high "rheumatoid factor" in one of the tests, but they "couldn't determine what was going on", and wouldn't see me any more.

Found Lymenet and concluded from all the info I found that I probably had lyme and was a victim of the american ...'medical' system....

Started some herbal remedies I read helped some people, grapefruitseed extract and olive leaf extract. Good initial results, but then started getting worse again.

From local lyme support group, found a real lyme doc, but it was pretty far away. Had another blood test, from Bowen. Found I had Lyme, ehrlichiosis, and babesiosis.
Was put back on doxy, but now at 400mg/day. Then added 'ceftin' (cefuroxime axefil) 500mg/ day to to the doxy after a month.
Stayed on this combi several months. Also increased grapefruitseed ectract and olive leaf extract to .5g/day apiece.

Then switched to clarithromycin ('biaxin'), 1g/day+ amox6g/day. Stayed on this combi for over a year. Got gradually better, but had many "herx reactions" for the first half -year.

Started artimesia anua 1g/day increasing to 2g/day (and continued garlic, 2+g/ day) for babesia, for a couple months, then added 'malarone' (which is atovaquone, but I'm not sure of the dose) for a couple months. Also was switched to doxy+clarithromycin. abx-wise. After this I began to rapidly get much, much better.

posted 01 May 2003 08:33               

Type: arthritic with some peripheral neuro involvement
Co-infections: Don't know
Antibiotics used oral (not sure of brand. . . i think it was diox . . 30 days use)
/Results SPECTACULAR: the severe pain is gone !!! . . after months of pain, then the diagnosis, 30 days later shes much much better . . .

. . . however, she is slowly losing memory / ability to think . . . pretty scary !! . . i need help !! (her doctor said to call if the arthitis returns)

posted 01 May 2003 10:00               

Place of initial infection:
Massachussets or Georgia

Length of infection:
At least since 1991

Co-infections:
Unknown

Antibiotics:
Azithromycin, first 250 per day then/now 500.
ALmost two months now, Bicillin injections.

Effectiveness:
Main improvement with Azithromycin alone was in the area of cognition. Since starting Bicillin, tendons seem to be improving, episodic improvement in sense of wel being,papular rash on back cleared, joints are better.

We will see but I am optimistic of good recovery/control and am prepared tostay on abx as long as needed.

David

posted 03 May 2003 02:39               

GOOD: zithromax and amoxy without plaquenil.

Rocephin.

Lorabid.

Hold the disease steady with a very gradual trend towards improvement over many months. But who wants to wait that long?

USELESS: Doxycycline (it worked very well at first, then the Lyme bacteria got resistant to it after I had an attack of acne that donated its plasmid DNA to them).

posted 03 May 2003 02:44               

GOOD: zithromax and amoxy without plaquenil.

Rocephin.

Lorabid.

Hold the disease steady with a very gradual trend towards improvement over many months. But who wants to wait that long?

USELESS: Doxycycline (it worked very well at first, then the Lyme bacteria got resistant to it after I had an attack of acne that donated its plasmid DNA to them).

posted 20 October 2003 06:11               

Positive WB IGm, even met the CDC criteria:66 41 23

coinfections of Bartonella, Babesia.. and unsure about Ehrlickiosis- test was borderline somewhat..

I saw this post when I was dx 1 year ago, but had nothing to put here yet , but now I canadd something to the post and will add to it as needed.

Excellent Results: Impenem IV( Primaxin) made a huge diff. in cognitive symptoms, but I had severe allergic rash after 6 weeks and had to discontinue..

Excellent also:IV Rocephin (10 mo.) clearing of many neuro symptoms incl. photosensitivity.. but reached a standstill

Good, IV zithro, zithromax-orals

Undecieded :Flagyl( stirs up head stuff)
Doxy, not truely able to evaluate as was only on for 10 days so far..
Cipro( having tendon, shoulder and disc. problems that may be associated with the Cipro
IV Clindamycin: was on in Combo on and off with Zithro and IV Rocephin and may have assisted w/improvements seen while on Rocephin - by itself did not herx or improve in my opinion..It is hard for me to say if this med was truely useless..

Starting IV Leiquin, Plaquinil, IV Zithro in 2 weeks and will update soon as there is something to add.

I will say that allthough they are not Abx., Provigil is very useful for fatigue
( Anti-Narcoleptic) and Diamox ( diuretic) is truely helpful for Swelling/head pressure /pain at head and neck area.,but should be taken with potasium as it deplete it .
Sandi

posted 20 October 2003 09:34               

Spectacular: Flagyl for one week each month - I herx terribly, but then feel great!

Very Good: Have seen the best results from Biaxin/Plaquenil/Amoxicillen combo. Take this every day throughout the month and then add the Flagyl as I said earlier one week each month.

Bad: Cipro/Doxy combo - terrible yeast problems and did very little to help with my symptoms.

nonantibiotic therapy: I take 300 mg. neurontin every night before going to bed. Seems to calm all the agitation with my nervous system.

posted 02 December 2003 13:17            

Anyone have some good updates to this? My doctor is thinking about the following combination for neuro stuff:

Omnicef/flagyl/zith/plaquenil.

posted 03 December 2003 22:04               

Very Good: Rocephin IV 2gr twice a day - 10 mos doing great, then ins cut me off. Re-started ~2mos later but never recoverd to same as previous, still taking it.

Mepron - for babesia- technically not an 'antibiotic'. Ev time tried to get off it, sweats start & feel worse. Never tested positive for babesia

Zithromax - bartonella
also take Plaquinal for symptoms

Flagyl - must be doing something, ???? major herxing going on NOW and since re-started it a month or so ago. Take it 3 times a day.

Useful: Initially, doxy 600mg day or was that 600mg twice a day??

Worthless: bicillin = only sore butt; Ceftin;Cipro;biaxin; doxy 100mg twice day a tiny help; amoxicillin no help
rifampin iv=major nausea & herx; rifampin oral=major nausea & herx
Levaquin - couldn't tell if did anything or not.