Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good evening all,
This may be a silly question, but I would just like to know...
If any of you, who have been in treatment for a long time...have found success going back to a mono-therapy of Doxy only?
I'm approaching 5 years of treating. While many things are MUCH better, some things are little improved, or have little lasting improvements once meds are halted.
I have only tried Doxy twice and both times knocked me flat at low doses (100mg), so I have procrastinated beginning this round. But the newest studies are finding the Doxy hits so many things, that I really feel a good trial is warranted now.
Sooo, I am hoping to hear that some of you have found relief on Doxy alone when other meds have stopped working. Anyone care to encourage me in this endeavor with your experiences?
Thanks so much in advance. Melanie
[ 16. January 2008, 12:10 AM: Message edited by: Melanie Reber ]
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey there Miss C!
Wow...I'm really psyched that you are thinking along the same lines as I am.
However, I am NOT going to start that high...I think I will stick to 100mg for a bit to see what happens. I still need to work.
I've no clue what bugs are still plaguing me...I feel like I have symptoms of all of them, and possibly things not even diagnosed yet. (part of the doxy reasoning)
I know you have had issues with Levaquin, but have you done Septra or Mino for bart? I feel like I made the most progress when I was rotating all three of those a few years ago.
Are you still doing Bicillin too? So many questions.
Yes, I know it is all a crap shoot, unfortunately. Part of me is still the eternal optimist that believes I will get totally cured. But the larger, more rational somewhat depressed part...knows that after being infected for so long, I need to just find a way to deal with continuous treatment, and not keep looking for an end point.
OK...anyone else want to cheer me up?
Posts: 7052 | From Colorado | Registered: Mar 2003
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Ah...hmmm....
Great minds do think alike in this case; I've also been considering doxy monotherapy.
In combination with some of the Buhner herbs; also wondering whether continuing the Bicillin injections would give all a boost.
My dog does quite well on doxy, and we were exposed to the same ticks. Vets have been treating Lyme for years before our MDs were, and their method of choice: doxy.
When I asked about other abx, like Flagyl, the vet said that doxy can be used for long lengths of time, without significant concern.
hmmm....
Melanie, I just read your post. I do believe that remission is possible, even if it means taking a maintenance dose of abx. I have gone from being bed-bound, to house-bound in 10 months; that is a huge difference.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey Canbrave,
My cat did great on Doxy too, and we were also exposed to the same things. Very nice point!
I'm SO pleased that you are doing so much better! That IS encouraging! Keep it up and THANK YOU! Posts: 7052 | From Colorado | Registered: Mar 2003
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Melanie,
Ditto to the great minds.
I took doxy for a year and then mino for a year. It was hard because I herxing a whole lot, but I know it did help me. I may try it again along with you.
I hope you are able to tolerate it and it helps you.
Hang in there..hugsss to all.. Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
Actually it would be quite funny if IDSA treatment 3 weeks of 100 mg doxy per day cure you.
Posts: 54 | From Canada | Registered: Feb 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I don't think there's any danger of that.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Ms. Melanie,
I am back on doxy (300mg a day 4 days a week)
and pulsing flagyl on Fri., Sat., Sunday.
I started on doxy a year ago and did well.
Then went after babesia (took zith and malarone and bactrim ds)
Then bartonella therapy.
Then babs again with biaxin this time.
Started back on doxy after being off of it a year.
Have to say even though I am herxing weekly due to the flagyl,
Overall my speech is better, my panic/anxiety attacks have greatly
Lessened, my joint pain is not as bad, etc.
I think I am going to have to do another babesia and bartonella treatment
Due to nymph attachment over summer ,
But I love doxy (especially in the winter months ).
You hang in there.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi Melanie,
Glad that you posted this. Am in a similar boat.
Not doing a mono-therapy but still hit and miss with different orals.
Been in treatment for 3 1/2 years and not a whole lot better.
Think Bart might be the problem for me.
Did 5 months straight, with no breaks of Levaquin and Septra with improvement only while on the meds.
Off meds declined within a couple of weeks.
So now I'm on Septra, Biaxin and Flagyl.
Recently my doses have been decreased to M,W,F 3 weeks out of the month.
Will see how I do. Septra doesn't seem to do it for me though.
I've got lots of lumps (around 20) along the backside of my thighs for about 4 months now.
If I don't improve on this might try something different myself.
After reading my journals that I've kept since treatment in 2005 I did really well with a combo of Cipro, Biaxin and Flagyl.
I might go back to that if I don't do well.
Will let you know.
BTW, how in the world can you work? I keep wishing I could go back to work but have lots of headaches with pain and pressure. Still some cognitive problems and vision issues too.
On the upside was able to pass 3 tests in December for continuing ed credits to maintain my insurance license.
Anyways, keep us posted!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6147 | From Columbus, GA | Registered: Jul 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
quote:Actually it would be quite funny if IDSA treatment 3 weeks of 100 mg doxy per day cure you.
If I understand correctly, that ship has sailed. I think both of them have been on that treatment and more.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Melanie, I have been in treatment for 19 months. I am just now TRYING to start Doxy (for the first time) w/Biaxin, my LLMD saying it is a "dynamite duo".
However, like you, Doxy kicks my rear at low doses, I lasted ONE day the first try. Now I am going to try Doryx which is extended release, I don't know if it will be easier or harder. I am scared to try it.
If you look up Doxy at the FDA website, there isn't much it doesn't kill, everything from Lyme, Ehrlichia, Bart, Mycoplasma, Staph, Brucella and on and on.
I am going to try it again, it is the roughest yet for me it seems, obviously it is killing something.
Don't forget the Doryx. I changed to Doryx about a month ago, and must say it is easier on me altogether (though I never had MONSTER problems with doxy)than straight doxy.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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was undiagnost for years.... treated iv and orals for years........ in remission for years......really...
now back on Doxy.....if i can tolerate it.... hasn't even been a week and already stomache issues...... but i am determind...... yogart....acidopholis.....water....green tea..... keep me going..... and i hate yogart......
i'm hoping for speedy recovery and back to remission.....(aren't we all!!!)
you can get better! mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
When first diagnosed,I took Doxy 300 mg a day for six weeks, had initial improvement, two weeks off, then another six weeks or so. On and off, then steady for three months.
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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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
Back in the day of first being diagnosed/treated by Dr. S in S.F, doxy by itself was the only way we had it prescribed, myself and both sons.
Starting off with it in the fall/winter months is crucial, especially here in CA. I'm sure you know that! But thought a reminder would be good too. . .
All 3 of us were on doxy only at various points in our years of treatment. Usually only 3 months at a time, as was the protocol back in the early to mid 2000's. After round #2 or #3, I noticed that both my younger son and I were developing an intolerance to it. Meaning, within a week of taking it again (after having been off of it for months)both my son and I started having strong side effect reactions----sun poisoning (and this was in the winter months) where we'd get little red painful dots on exposed skin (hands mainly)and my youngest son developed acne rather violently as well.
If I were to ever consider doxy again (it's been years since we've taken it) I would go straight to Doryx. For the stomach issues (I hear Doryx is easier on the stomach) and only take it in the winter months.
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Hi Mealanie!
As you know I have been in treatemnt a very long time. I could never tolerate doxy orally.
I started in Oct on doxy IV. The first two months were tough....so tough that I asm now going two weeks on (200 mg am and pm) and one week off. But.....I believe it is giving me a new edge.
Good luck and take good cvare.
Healing smiles....lightfoot
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
....are we doing ESP or something??
I was always a doxy flop. Never did a thing as far as I could tell, but having only remnants of this stuff happily ensconced in my knees and elbows I thought I'd give it a try over the winter.
I just finished 400Mg/day for 6 weeks and thought I'd do 100 or 200 Mg a while longer as maintenance. It makes my right knee hurt when I wake up, still doesn't do much as far as I can tell, knees are still ugly and elbow too. But then there's no doubt permanent damage after this many years.
I wasn't going to report till I saw if it did something but then this thread came up.
Oh well....other than knees and elbows I'm pretty much OK.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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Hi, I did Doxy my first month in treatment one week at 400mg, last three weeks at 600mg. I will tell you my CD-57 score jumped from 18 to 32 in forty days. However I don't know how valid the CD-57 test is.
When I finished the 30 days of Doxy I was retested for Erlichlia and was now negative for it. So the 30 days of doxy did the trick. I ended up with a sunburn on my face that I thought was going to be permanent.
I was able to cover it with makeup and within 3 months it did disappear but it was pretty red.
Since doing Doxy I have done Mepron/Azith combo, bicillin for six months and just started into my seventh month of Rocephin IV.
During all this antibiotic treatment (19 total months), my CD -57 score went down and only ever rose with the 30 days of Doxy.
I will probably add it to my regimen again once I'm off Rocephin. I too have yet for obvious bartonella symptoms.
Good luck,
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Melanie, Years ago, before Lyme diagnosis, I was found to be positive for 2 strains of Mycoplasma. I was started on Doxy. Nothing really happened for the first week then WHAMMM!!! I found myself in the ER, with heart rate sky high and BP on the floor. That was my first herx.
I have never used Doxy since, scared the heck out of me to experience how powerful it was on whatever bugs are ailing me.
I then tried Mino, which I have since learned can be even worse because it penetrates much deeper. Before I started the Mino though, I researched herxing and how to control it. Found the Road Back Foundation. There I learned of people who herxed so severely on Mino and Doxy that they used micro doses. I turned out to be one of those people.
I herxed on as little as 6 mgs pretty badly. People say it can't happen, but it did! I have never gotten to a full dose of Mino, in fact the most I have ever taken is 100 mgs. every other day.
Mino penetrates really well, but I also used something else, heparin. It wasn't an intentional choice, but together they seem to kick butt. I am in remission for about 6 years now. I have had a couple of flairs, one which really worried me, but I have pulled out of it with little effort. Actually all I did was start the heparin again, not abx.
Mino and Doxy work really well against numerous bugs other then Mycoplasma, and Lyme was one of the bugs I am killing with the same stone or should say "have killed".
I was not just a little sick, I was bad sick, I was literally wasting away and doubt I had to many years left. Now I feel better then I have my whole life. I am 51 and sleep like a baby when most women my age can't sleep at all. I am very active and happy with my body most of the time now.
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
What this is leading me to is that there is no magic bullet, regardless of the fact that we keep hoping for one.
What I would like to see is a discussion board where we post in categories of constellations of symptoms, and which treatments achieved remissions.
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good morning!
All of your answers have been so informative and interesting. Thank you so much for taking the time to add your input! I began Doxy yesterday...so we shall see if it hits me as hard as it has in the past. I should have an answer by Sunday.
Thanks for all the reminders of Doxy do's and don'ts. It has been a long time since I have had to worry about them.
I completely agree that there is no magic formula that helps everyone. It is an experiment each time we put something, whether pharmaceutical or herbal into our bodies. And, I also feel like most of us are dealing with infections yet unknown to us or others.
I suppose we just have to keep plugging away until we reach a point of balance.
Once again, thank you each for sharing your experiences, you are invaluable!
My best, M
Posts: 7052 | From Colorado | Registered: Mar 2003
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hope you do really well on it!!! i'm rootin for ya!!
mtree
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Been in treatment for 5 1/2 years now. Tried it all, seen them all.
But you're making think about Doxy again.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I just noticed I have a bottle of doxy around.
I tried taking it before and must have had a negative reaction for it to still be here.
Have telephone consult with lyme doc end of month.
He may have me try again with the doxy.
Please let us know how you are doing on it....you little guiney pig you.
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
This interesting discussion and Cave's question got me thinking about what exactly I am treating now with minocycline. Found this article on mycoplasma tx; have not heard anything more about the new abx it describes, ABT773:
Antimicrobial Agents and Chemotherapy, January 2003, p. 39-42, Vol. 47, No. 1
In Vitro Activities of ABT-773 and Other Antimicrobials against Human Mycoplasmas
Ken B. Waites,1,2* Donna M. Crabb,2 and Lynn B. Duffy2 Departments of Pathology,1 Microbiology, University of Alabama at Birmingham, Birmingham, Alabama2
Received 3 June 2002/ Returned for modification 24 August 2002/ Accepted 1 October 2002
The in vitro susceptibilities of 103 Mycoplasma pneumoniae isolates, 14 Mycoplasma hominis isolates, 12 Mycoplasma fermentans isolates, and 24 Ureaplasma species to ABT-773, an investigational ketolide, and seven other agents were determined.
For M. pneumoniae, the ABT-773 MIC at which 90% of isolates are inhibited (MIC90; 0.001 �g/ml) was comparable to those of azithromycin, clarithromycin, and erythromycin and at least 128-fold lower than those of levofloxacin, gatifloxacin, moxifloxacin, and doxycycline.
For M. fermentans, the ABT-773 MIC90 (0.008 �g/ml) was 2- to 128-fold lower than those of all other agents tested.
For M. hominis, the ABT-773 MIC90 (0.031 �g/ml) was equivalent to that of moxifloxacin, 2-fold lower than those of gatifloxacin and clindamycin, and 16-fold lower than that of levofloxacin.
ABT-773 was equally active against doxycycline-susceptible and doxycycline-resistant organisms.
The ABT-773 MICs (0.016 �g/ml) for Ureaplasma species were the lowest of those of any drug tested. The MIC90 was 4- to 64-fold lower than those of clarithromycin, azithromycin, and erythromycin and 16-fold lower than those of all three fluoroquinolones.
Minimal bactericidal concentrations determined for a subgroup of organisms were 0.063 �g/ml for M. pneumoniae and 0.25 �g/ml for M. fermentans, but they were several dilutions higher for M. hominis and Ureaplasma spp.
ABT-773 has great potential for further study for the treatment of infections due to mycoplasmas and ureaplasmas.
* Corresponding author. Mailing address:
Department of Pathology, WP 230, 619 19th St. South, University of Alabama at Birmingham, Birmingham, AL 35249. Phone: (205) 934-4960. Fax: (205) 975-4468. E-mail: [email protected].
Antimicrobial Agents and Chemotherapy, January 2003, p. 39-42, Vol. 47, No. 1
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I was trying to figure that one out as well...I wonder if it is similar to Ketek?
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
It looks like ABT-773 is Cethromycin.
Ketek is Telithromycin...both from the ketolide family.
I had an awful time with Ketek, but I know it has helped many. (hmmm, perhaps it was working TOO good?)
I wonder why Cethromycin hasn't been mentioned as an alternative?
............. Miss Katherine
- please make sure your bottle of Doxy has NOT expired. It is the ONE ABX that I know can harm you if expired.
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