I was just thinking about babesia treatment and how (at least from what I've read) a lot of people who tested negative said it still helped them to feel better and in some cases much better. So I was wondering if there is any correlation between having a positive test and responding positively to meds, or if amount of people potentially helped by the medications is much wider?
Anyhow I came up with a list of questions that I thought might shed some light on this and related matters.
Please answer if you have taken babesia treatment or are taking it currently! (regardless of your test results):
*How long have you been taking (or did you take) anit-babesia medications?
*Which medications?
*Any Other Anti-microbial medications concurrently (e.g. anti-lyme, anti-bartonella etc.)
*How much would you say it has helped? Or did help? Which Symptoms? Feel free to use a scale ( like 0=didn't help any, 5=totally eliminated).
*Did you have a postive test for babesia? What type of test? Which Lab? How many times?
*Did you have a negative or indeterminate test? What type of test? Which Lab? How many times?
* Anything else you'd want to mention or think is relevant to mention.
Thanks in advance for your guys' great & thoughtful responses!
Sincerely,
john duncan
-------------------- "...reading the Meditations for long periods can be conducive of melancholy." --qtd. in intro to Meditations Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
| IP: Logged |
I had a babesia test thru Igenex. It was "borderline"... I herxed HARD on the meds. I had babesia for sure.
After 5 yrs on this board I can tell you I've seen tons of people who were never treated for babesia because of a negative test. BIG mistake.
If you're not getting well after alot of meds for Lyme, then ask your dr for babesia meds, just in case you have it. Babesia tests are just as lousy as Lyme tests.
To answer one of your questions, I took clindamycin and Quinine for the babesia. Later I took artemisinin.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I never had a test, but lots of babs symptoms. Took mepron/zith for 4 months, most symptoms stopped, particularily the sweats.
QUESTION/NEED OPINION FROM OTHERS PLEASE After 4 months OF no antibiotics and thinking life was gonna be manageable, I had to go back on ketek/flagyl 6 weeks ago. Guess what started again? Sweats. Would this be a reaction to my ketek/flagyl, or do you think I reactivated the babs?
Sorry to hop in on your question, Sunny. But it it related.
Posts: 190 | From BC Canada | Registered: Jul 2004
| IP: Logged |
posted
Someone told me that ketek works on babesia. But...it would NOT be uncommon for it to return after only 4 months of babesia meds. I had to take many, many rounds of meds.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I have had positive PCR's and one positive titer for babs... I have taken a total of 6 rounds of Mepron and Zith and have been on Malarone for the last year... I would have never turned a corner without these treatments....
Posts: 437 | Registered: Sep 2004
| IP: Logged |
posted
Am certain I had relapsed from several yrs remission, but then had combo babs/erlichiosis symptoms.
I've been doing months of zith/doxy combo. What would be the standard abx protocol for babs? erlichiosis? How does one determine what abx is good (works) for one person and not another?
I am steadily improving with symptoms almost nil and mental capacity and physical stamina returning. Combo has been VERY helpful.
My first test in 96 was Quest and returned IND in a LOT of the bands. I was diagnosed clinically (thank God). Following tests were Quest and Neg, Neg, Neg, Neg, Neg, Neg and last by my llmd during abx treatment have returned Neg. Forget which lab he uses maybe Endo?.
-------------------- Lymester Posts: 519 | From CT | Registered: Jun 2004
| IP: Logged |
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Dude, are we getting paid for this focus group? VERY important subject, so I'll throw you a bone.
L2 Amen, Sister! Right on!
In a nutshell. Mepron made a HUGE difference and relieved me of sxs, including BRUTAL fatigue and chest pain, I had for years. I tested neg and my LLMD said their are many strains of Babs not detectible by current tests.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
| IP: Logged |
quote:Originally posted by Foggy: Dude, are we getting paid for this focus group? VERY important subject, so I'll throw you a bone.
L2 Amen, Sister! Right on!
Hey Foggy....Your signature should read "Lyme, the great IRRITATOR"!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Mepron on 5th month..... feeling good! Biaxin 10 months and bactrim 2 months.
So far so good.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
| IP: Logged |
WildCondor
Unregistered
posted
I had good luck with 3 teaspoons of Mepron per day and 1200 mg Zithromax for about 5 months. Cleared the night sweats and the cognitive brain fog, It also took away my facial flushing and fits of fevers.
After a re-infection I took Mepron/Zithromax and Artemesia for 2 months until my GI tract coulldnt take the meds and I had to stop. I tried Larium and it made me severely depressed and moody with loopy head symptoms. I never tried malarone, not yet anyways. The labs I have used are IgeneX (Babesia panel and Bowen)
IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Weak positive, Igenex.
8 Months Mepron (with Biaxin and Artemesia.)
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
BTW, the biggest thing it did for me was stop me 'constantly' feeling like I was walking on a mattress or like I had springs under my feet.
I still have had night-sweats though, that did not change at all.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
posted
My daughter had neg babs test but all the typical symptoms ....so she was put on Mepron and Zith and it helped a TON.
She was almost completely back to normal after 5 months of this combo and had a relapse. Her llmd decided to change her zith to Biaxin XL and now she is having major herx.
He felt the zith became uneffective. She is still on Mepron. pattiecake
Posts: 687 | From PA | Registered: Oct 2004
| IP: Logged |
liz28
Unregistered
posted
1. I've been on babesia abx for almost a year.
2. Mepron 2 teaspoons, twice a day Artemisinin, 300mg per day Ketek 400mg twice a day Tons and tons of liver support
3. I'm also treating bartonella and Lyme. The bart treatment is about halfway done right now.
4. I have always had a negative test result, but have had 100% of babesia's symptoms.
I was disabled with "chronic Lyme" for four years before adding co-infection treatment. I'm now at 90% remission.
Unfortunately, I've had the same experience many others have with babesia--it relapses on a monthly cycle, so you have to stay on the drugs a long time. It may be necessary to consider staying on "maintenance" drugs for a long time. However, they are making a tremendous difference.
IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
There's a conference video which shows Dr. H of NY talking about the results of a study he did with his patients where he treated 1/3 patients with Mepron, 1/3 with Artemesia and Mepron, and 1/3 just for Lyme- and his patients- regardless of serology- did best who were treated with Mepron & Artemesia- next best those with Mepron as well as Lyme meds- and the patients with the least success were those treated simply for Lyme.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
My pastor did 2 months artemesinin, got better then relasped, did another 3-4 months and symptoms gone, went negative on bowen test.
Posts: 512 | From Memlo Park, Ca USA | Registered: Sep 2002
| IP: Logged |
liz28
Unregistered
posted
Oh great. Dr. H is the guy I fled from earlier this summer, after 2 1/2 years of not getting better, being disabled, going through all my savings and a chunk of my parents' retirement savings, being told over and over that co-infections could not possibly be the problem, and being told that chronic Lyme in women is caused by unsettled emotions. PLEASE don't tell me he may have included me in a study without telling me.
No, on second thought, don't. I already know the answer. "Regardless of serology"--that means, people he knew had babesia but didn't test.
For anyone out there who may be in a similar situation or is worried about falling into one, here's what is working for me. Watch out for the frauds, people. They are out there.
Lyme: omnicef 300mg/2x day ketek 400mg/2x day
Babesia: mepron 10ml (2 teaspoons)/2x day artemisinin 300mg ketek 400mg/2x day
Bartonella: rifampin 300mg/2x day ketek 400mg/2x day
Liver support: Dr. Zhang's Hepa Formula 2 (active ingredient=schisandra) alpha lipoic acid N-acetyl choline phosphatidylcholine milk thistle
posted
[QUOTE]Originally posted by liz28: PLEASE don't tell me he may have included me in a study without telling me.
No, on second thought, don't. I already know the answer. "Regardless of serology"--that means, people he knew had babesia but didn't test.
That really stinks!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
My son did IV zith [1000mg] p-day and then pulsed plaquenil/artemisinin [ 3 weeks on, one week off] for 3 months. Made huge strides quickly, and symptoms have not returned.
Would strongly advise to take the art with any babs treatment. WHO uses it for malaria, which babs is related to. Dr. B also recommends art in combo with zith/mepron, or malarone.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
For us: -7 mo mepron/zith (then ketek) with bicillin; no babs sx at all, then small relapse (sweats and anxiety attacks) after 6 mo, retreating within 2 weeks of noticing relapse using malarone/ketek. The herx the 2nd time around has been minor compared to the first tx, but the exhaustion has been pretty bad.
- 10 mo mepron/zith (then ketek) with bicillin, plus 2 mo each septra then levaquin for bart; felt excellent for 2 mo, then big relapse with fever, massive headache, muscle ache, sweats, anxiety, rage and exhaustion; retreatment started a month after relapse with malarone/ketek, then adding doing bart retreatment with Factive. Herx on babs tx not so bad as first time around.
I think we need to change our model for babs tx and start planning for relapses for long-term lymies. If we'd had the malarone (or mepron) on hand, and had recognized we were having a relapse, we'd have caught it and treated it sooner. From what I gather anecdotally here, seems to be a pattern of increasingly mild relapses that respond quickly to tx.
If Allred's persistance model for b. bovis is also accurate for us (with some form of sequestration going on) , then I wonder if you have to kill down the available load of babs and wait until the next round becomes vulnerable to abx.
Based on our experiences, I also think the coinfections really complicate the relapse picture. The bart came back strongly for the hubby right around the time of the babs relapse. I'm convinced that if he could definitively kick the bart, the babs would be more controllable.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
Thanks Guys for your very informative responses and the bone also. Sorry not to repost in a while, can't seem to string a few "decent" (I use the term very loosely!) days together.
How are you guys so gracious and cheerful? Maybe this Babesia Treatment really is something, eh? Well, obviously most everyone on this site is like that, but I still wonder how you all do it? Probably from knowing everyone here is in a similarily bad situation, or has been, but this illness is so destructive of most every-one of our abilities to communicate, and even view ourselves as people with pasts and futures, I don't think I'd be able to not let sadness bleed into my 'web personality', if I visited any forum a whole lot...
Sorry to digress. I thought everyone's posts were very interesting and as a whole even more than the parts. Thankfully, enough people responded I think one can begin to cautiously draw conclusions from it.
The first thing I was curious about was whether people who tested postive or negative would react to medications differently or the same, and (if my counting is right) it seems of the seven people to explicitly mention testing, 3 were negative (counting indeterminate as a postive) but all these people improved on treatment. This would seem to confirm that testing is unreliable.
Probably the most remarkable thing of all is that most people seemed to notice a very large improvement on Babesia treatment... (If I read everyone's post correctly everyone had some kind of major symptom improvements, even if they relapsed later?) This seems to indicate that treating babesia is a very important thing for all people with lyme to consider and could very likely result in major improvements especially for people who have some of the characteristic symptoms (if this sounds stupid-obvious, sorry it probably is): shortness of breath, nausea, fever, shaking chills, muscle aches, severe fatigue.
Also people seemed to usually need to stay on treatment for at least four months for success (which is what is in Burrascano's guidelines) and there seem to be frequent relapses (which aren't as bad as the first relapse or herx as Minoucat already stated). On the face of it, that would suggest to me that with the most current Babesia Treatment (Mepron and Zith/Macrolide) there is either something about the infection that requires very extended treatment, for example some aspect of the life cycle or localization of babesia, or the treatment regimen is just not as good as one would hope at killing babesia period and therefore needs an extended time, or some kind of modification (maybe Artemisinin, I don't know?).
Liz28 sorry you had to go through the experience of being treated so horribly by your doctor and having your treatment delayed. It does make me view the meaning of that doctor's study in a totally different light than how I would otherwise.
It seems pretty arbitrary and cruel to break people up into treatment groups without testing them or diagnosing them for the infection in question (babesia), especially when they are asking to be tested and you (should) know there is a chance they have a coinfection, and since there is no criteria for being in one group or another, it's hard even to say what knowledge is gained, other than that patients who present with lyme disease have a good chance of having babesia or a similar infection; which was known already...
One thing, you know not to take Mepron and CoQ10 at the same time right? (just mentioning cause you mentioned both in your treatment, maybe not simultaneous?) I believe the Mepron is supposed to work by blocking the parasite's ability to use CoQ.
Well thanks everyone for the all the responses! Wishing you all the best of health.
john duncan
P.S. forgot to mention i just tested positive for babesia on the FISH by Igenex.
Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
| IP: Logged |
posted
ok biaxin mepron and plaqunil for almost 2 years. FISH test came negative after that. It helped a lot specially with my neurological symptoms..
Posts: 983 | From The sky | Registered: Feb 2005
| IP: Logged |
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
I am in a weird scenario...floating in the middle of a babs flare, bart scare and Lyme melt down (I think the Lyme is low right now)
I was on Ketek 400mg, Mepron 750 x 2, bicillin, and flagyl.
I was going downhill, or just needing an adjustment in meds towards bartonella...called my LLMD and they dumped me to malarone and justa one time hit a fizzing Zithro.
I am very concerned about this at this time.
Bones are aching.... my sensitivities are better thank the Lord....but, I was still herxing on Mepron...WITH the Ketek,,,,,I also had added a second dose of Ketek just to check,,and yep. It worked.
Dang man.......liz28.who you seeing?
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I tested negative for babesia and other co-infections at a NJ lab (strong Igenex positive for Lyme).
LLMD still put me on artemisinin anyway. Also taking cordyceps and detox Chinese herbs.
Been on full treatment 4.5 mos and all symptoms are markedly improved (even though I still have some nasty days, like yesterday).
Liz, a blind study at what was possibly your expense (literally and figuratively) makes my blood boil
I'm just glad you've found a good doc now!
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[bow]](graemlins/bow.gif)
![[Smile]](smile.gif)
![[cussing]](graemlins/cussing.gif)
![[Mad]](mad.gif)
![[Wink]](wink.gif)
Well, obviously most everyone on this site is like that, but I still wonder how you all do it? Probably from knowing everyone here is in a similarily bad situation, or has been, but this illness is so destructive of most every-one of our abilities to communicate, and even view ourselves as people with pasts and futures, I don't think I'd be able to not let sadness bleed into my 'web personality', if I visited any forum a whole lot...![[Frown]](frown.gif)
Printer-friendly view of this topic