posted
reviving thread to see if anyone more has found a successful treatment for WA1 since ~5 months ago?
...It seems like I've tried nearly everything which the board, or my doctor, or i thought had a chance to work: Mepron (+ a Macrolide), Malarone, Lariam, High Dose/Low Dose pulsed/unpulsed Artemisinin and Primaquine. (usually two or three of these at a time)
Unfortunately, this hasn't worked since I recently had what is very likely a Babesia relapse upon quitting the Mepron (returned exhaustion, mental sluggishness, depression, sweating, after about 7 days off Mepron).
If anyone has beat this WA1 what treatment did you use? Is it even beatable? It's good I didn't know at the outset that after 8 months of primarily treating babesia it would still be a failure, as of now, since this might have been too powerful a despair.
Additionally I've probably been unable to treat Borrelia aggressively enough because it would probably be too much combined with aggressive babesia treatment.
-------------------- "...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
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liz28
Unregistered
posted
Hmm, there's a couple more abx you can check out.
Quinine is a great drug when monitored by a doctor, chloroquine may or may not work (sorry, haven't had a chance to try it yet), and pyrimethamine-sulfadoxine (also called Fansidar) is still out there, although it's another one with heavy side effects.
Malaria doctors sometimes prescribe quinine with either Fansidar, clindamycin or doxy at the same time. There's another drug called Proguanil that is considered pretty useless on its own, but is a component of malarone and is often taken with chloroquine.
Also, start bugging the Bill Gates Foundation, the Roll Back Malaria Project, Doctors Without Borders, the World Health Organization, the Hospital for Tropical Diseases in the UK, and anyone else out there who might have a handle on new drugs coming out. The malaria community has gotten a major financial boost recently, and there's going to be new drugs on the market soon.
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Michelle M
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posted
I'm so sorry, Sunnyslumber.
I'm am one month out from a positive Babesia WA-1 test.
After a couple weeks of thinking I might actually die from the head pain, my head is feeling much, much better.
While I feel extremely optimistic about this, I can't say that my LLMD seemed really optimistic today about KEEPING it gone. He actually sounded more optimistic about keeping lyme gone than Babesia WA-1. Sheesh.
I haven't gotten into it long enough (just a month so far) to have any of those symptoms you list even let up for me (exhaustion, fog, etc.) -- however, the headaches have relented BIG TIME.
My LLMD told me today that some of neuro stuff could be attributable to the babesia and MIGHT, just MIGHT improve.. Like my arms are really hurting (nerve problems in both arms); he said that could be from babesia and not lyme. He said the tiredness and brain fog might also be helped by continued treatment also.
Right now, I'm so happy the brain pain has let up that I could just go kiss a horse.
There is a real shortage of research or case studies of babesia WA-1 out there.
I s'pose we'll have to form the Babesia WA-1 Buddies and do our own study!
Hope you will find some combo that works. Pleae keep us posted as you "pave the way."
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Hey SunnySlumber,
I hear your concerns. I recently tested positive for WA-1 antibodies but just now got my Mepron & Zithromax approved by insurance.
Your thoughts are in the back of my mind as well.
Hey Michelle, yes, a WA-1 Buddies thread would be a great way to compare treatment and symptom notes.
I don't mind trying the treatment. Just don't want to risk any long term side effects, especially if it's not going to get me ahead.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
For the record, since babesia is a reportable disease, how many people in California HAVE Babesia WA-1? The tiny little bit of research I can find on it is several years old and has some bogus number like only 7 or 8. Obviously there must be many, many more people.
How many? Does anyone know?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I have Babesia WA-1 but have not been contacted by any health department in CA. So I am not sure if it was actually reported or not.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I got my babs on the east coast, so it isnt WA-1. The place I was infected is considered to be super highly endemic (SE PENN) and the LLMDs in the area say babs comes along with lyme there in MOST cases.
BUT---the journals and literature still say it is rare. It is NOT rare. here there everywhere. It is not rare.
It is taking so long for these people to CATCH on isnt it?
Hi to all my babs buddies! trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Thanks for responding Liz28, Michelle M, Tabbytamer, SForsgren, and Trails! Thanks for the additional suggestions, I haven't yet tried clindamycin/quinine, chloroquine, fansidar, or one of the Artemisinin based combination therapies for that matter.
Not sure if my WA1 case was reported either; are the reports supposed to come from the labs or the doctors? Anyhow I tested positive on FISH so I'm not sure if that's a reportable test or if it has to be a serological positive to qualify as a "reportable positive"?
I do know from reading a review on Babesiosis that serology surveys in CA have found anywhere from about 1% of people positive for Babesia WA1 antibodies to 20%(!). The review was from 2000 so there might be more recent and extensive data in more recent articles.
Even (making the unlikely assumption) that most of those people are just cases where the Babesia is eliminated & the antibodies persist for a long time or a subset who are reexposed every so often thus keeping the antibody response primed, there are still a lot of people who are probably in the carrier state. Certainly a lot more than 7 or 8 people here in California are infected with Babesia!
Agree that Babesia buddies, WA1 buddies or a revived Babesia buddies thread would be a good idea!
Good Wishes,
john duncan
Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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posted
I want to follow this topic. My third test for the coinfections, including WA1, came backc negaive. And yet 8 weeks ago I started mepron with the biaxin, and have seen the most progress ever. The profound malaise is 80% gone. Though my brain is still tired, my mental clarity and memory have improved significantly.
But meeting with my LLMD today, she said it wasn't clear whether the mepron did it, or whether it was the whole program ... particularly the ceftin for the mental functioning.
So I am confused, but I think everyone is confused because we don't have enoughs scienitific facts and information.
Sometimes it makes me feel like Lyme is like modern psychiatry -- hit and miss, trial and error, with a lot of suffering in between, and mechanisms not clearly understood.
I feel like I am in a crap game, and every few weeks, every life cycle of the bugs, every change of protocol, is another throw of thedice. What will come up this time?
I wonder if I will ever get my health back. And, if I do, what do I do with the rest of my life.
Answers are not clear, and there's just a general direction, like driving in a mild fog. In and out of thicker patches where nothing can be seen, and then, suddenly, into clear patches.
I don't feel discouraged. Just ... groundless.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
Hi everyone, since you are discussing Mepron. I have been on it for 5 days. I developed a very wierd dry cough that won't stop..has any one else had this side effect?Thanks Sondra
Jeff. I agree with your description of this disease and how to cure it...No one really knows....................
-------------------- Love Sondra Posts: 3 | From napa, california | Registered: Sep 2005
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
The cough you describe could be a symptom of Babesia. Often during treatment symptoms such as sweats etc become more pronounced before they get better.
I think this is a sign that you have Babesia and the Mepron is working to try to kill it.
This is not medical advice, but just my opinion.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
My WA-1 went away (I believe--no obvious babesia sx for a year) with the mepron/zith/art tx. I had a small relapse after the first tx which responded beautifully to 6 wks of malarone.
The hubby, who did exactly the same protocol as I did, has had a couple of bad relapses.
He HASN'T yet tried (but I'm sure we'll get around to it):
- chloroquine/primaquine (primaquine/mepron helped a lot, but he's still symptomatic)
- Larium (absolutely a drug of last resort and of very dubious efficacy, IMHO)
- quinine/clindamycin
- pyrimethamine-sulfadoxine
He hasn't tried babs-specific therapies in combo with heparin, although he did do heparin/doxy at one point to treat LD and his very very very high fibrin levels.
He did use plaquenil, at a fairly high dose and in combo with doxy, many years ago at the beginning of his tx for LD (it wasn't for Babs, though, but to treat his arthritic pain).
He's used artemesinin, cat's claw, and some other herbals (especially Dr. Z's stuff) which, again, helped but did not cure the babs.
First chronic relapser to find a successful tx wins....a day without a headache?
Sondra, I didn't have the cough on Mepron and neither did the hubby, but I was very breathless. Respiratory distress is a key sx for babesia die-off in bovines (sorry, couldn't find good info on humans) FWIW. You may be experiencing a babs die-off symptom, I dunno. The cough is not listed as a mepron-specific side effect anywhere that I am aware of.
Buhner has some herbal suggestions for supplementing babs tx in his book -- can't remember of the top of my head what they are.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I haven't beat it, but am also interested in this!
I had 6 months of Mepron plus a macrolide, and relapsed pretty quickly. Before treating for the first 6 months, I only tested positive for babesia microti - now that I've relapsed my WA-1 is positive, too.
I don't think I've been recently re-infected, just that my first babs WA-1 test was a false negative or something along those lines. I've lived in areas endemic for both types, so wasn't that surprised.
About the cough: Since starting back on babs treatment, I've had to return to using an inhaler (gotta breathe, breathing is good), and I've had a cough, also. I attribute it to babs symptoms, which always seem to become very pronounced during treatment for me. (I'm living in my own private summer - air conditioning or no!)
...headaches have improved, too, though so I see some progress.
Relapsing is a stinker, isn't it?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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tabbytamer
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posted
By "relapse" are we talking about the same strength Babs as before treatment began, or a now more resillient strain of Babs?
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Tabby, I'm not sure about the others, but in my case I don't know the answer to that.
I called mine a "relapse" although I can't recall if my LLMD used that word specifically - I think she did, but I'll have to check with my brainy half later (my partner goes to all appts - I need the extra brain cells along).
Would there be a difference in symptoms between babs (microti) and babs WA-1? My "babs" symptoms returned soon after stopping Mepron, while I was on IV Rocephin, so I've thought of this as a "relapse" although technically it's a different strain of babs - so there's the answer.
Since my initial test for WA-1 was negative, and pos for microti, and after 6 mos treatment, I'm now pos for WA-1 and neg for microti... Maybe the more resilient strain applies in my case?!
Isn't WA-1 more resilient in general than microti?
My LLMD did seem to think that we have uncovered a second sub-species, and that this is positive, to some extent.
From a practical standpoint, I just want to be rid of the symptoms.
It would be interesting to know how many people have both types of babs, and if anyone has noticed a difference in treatment, results, etc.
Healthy wishes to all.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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You say that you pulsed Art at a high dose..how high did you go and how many times a day for how many days in a row. How many of these pulse periods did you do back to back? Did you take Primaquin at the same time?
Some people have reported good results with Riamet if you can get it.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Areneli: Dr B wrote WA-1 is a hard bug to kill.
I saw where he wrote that, but I didn't see where he elaborated... :-(
I responded great to standard treatment (despite thinking I was dying initially). Whooping for joy for a while! However, after a couple months it came creeping back.
Changed insurance companies from Blue Cross to Blue Shield. Blue Shield said: You get 7 days Mepron. That's all. Ha ha ha.
Stopped working. LLMD today gave me good news that I will now be able to get two months of Mepron and I will start again tomorrow on the beast that lives in the head.
After that, sans insurance, who knows?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by micul: Sunny,
You say that you pulsed Art at a high dose..how high did you go and how many times a day for how many days in a row.
Sorry to plunder Sunny's thread here. I did Art at 600 mg a day while on my 2 months of Mepron. No breaks.
Even when off Mepron for the past several months I've stayed on the Art in case that helped any. Maybe so, maybe not.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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tabbytamer
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Member # 3159
posted
Michelle & others,
When you stopped the Mepron, did you continue on the Zith (or whatever abx you were taking with the Mepron)?
John/sunnyslumber,
Glad you brought this thread back up.
I'm in my third month (?) of the Mepron/Zith/Artemisinin and feeling better. Clearer head (forgot what that felt like!) and getting some energy.
But, here's my question, is the improvement from the Mepron getting at the Babs, or from the Zith getting at some of the Lyme?
I am feeling as well now as I was feeling after several months on just Bicillin injections (one a week)---Before treating any of the Babs.
posted
up
Posts: 925 | From California | Registered: Sep 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I stayed on Mepron for 2 years to get rid of it but it is gone!!! My daughter was on Mepron 9 months!! I was also on Artemesia with it-
-------------------- 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
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posted
To answer Micul's question: I started it by doing it at ~900 mg (600-1200)each day (in 2 or 3 doses) for about 3 weeks using the Mepron + Biaxin (but no other anti-babs drug).
Then after the three weeks I did the same dose (with the same meds) for periods of about 3-4 days, starting a new pulse about a week after finishing the last one. I did that for about 1 1/2 to 2 months and then stopped doing the ART since it made me feel nervous-excited(e.g. i couldn't control my train of thought very well).
Tabby I relapsed after stopping the Mepron (still on Biaxin) after about 6 months. It happened in like 3-4 days which my doctor said is not too fast for a relapse of babesia (though it seems really fast to me). So for me it was probably the Mep holding back the Babesia or getting at some of it.
On your last point, we're using drugs for Babesia Microti which is different enough that they might not work (as) well for WA1. It would be really nice if we had something that we knew worked well for WA1.
john duncan
Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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posted
I have WA-1 that won't go away. My LLMD wants me to go on tindamax and zith for it. I have been on zith and mepron for 6 months and it wasn't killed off. The mepron is too much for me now and I have to try something else.
I am much better than I was in the beginning and I think WA-1 has been responsible for most of my misery.
What about riamet? Has anyone tried this for it?
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by tabbytamer: Michelle & others,
When you stopped the Mepron, did you continue on the Zith (or whatever abx you were taking with the Mepron)?
Oops - this fell off my radar.
I did not continue the Zith on my non-Mepron months; only the Art.
However, I did still take my normal Amoxy 3000 mg per day + Probenecid.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by surg: I have WA-1 that won't go away.
Up.
Surg, for some reason I thought you were doing better. So sorry you're still battling.
Bumping this for the Riamet-savvy!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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