posted
If this is support group, why tell everyone they will never get rid of their babs. Makes me want to quit trying if there's no hope. I understood babs was treatable. If nothing kills them, why try?
Posts: 199 | From utah | Registered: Jan 2009
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
People have recovered from babs.
Maybe it is true that they stay present in the body...
but I believe remission from it is possible.
I personally dont care if I have it in my body as long as I can someday put it in check.
charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
....I have it under control using primarily bactrim and artemesinin. I have no idea if it's gone or not but I function normally most of the time.
That's what matters, right???
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I guess the point of that post eludes me. TO not want responses to it seems odd. I'm lost.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
That is why I posted a reply to it before the topic was closed to posts.....I wasn't trying to argue; I was just confused because he never clarified if he thought it could be killed off or not. The post read like a movie that got suddenly cut off with no ending.
It also seemed sort of contrary to the point of posting something on a Discussion Board. If you don't want responses, why not just post your findings on a separate site, and post the link to that site on lymenet?
Is Lymenet now just open to anyone who wants to post their ideas on a thread and not allow any responses?
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Micul, I'm no microbiologist but I don't see the Maltese Cross in very many of your pics. Are you certain it's babesia? If you are why not share with Nick Harris and a good pathologist who can do a Giemsa smear themselves? I would want my suspicions confirmed.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by bwillis: If this is support group, why tell everyone they will never get rid of their babs. Makes me want to quit trying if there's no hope. I understood babs was treatable. If nothing kills them, why try?
There are people walking around who successfully treated it. I am one such, who had a pretty evil case of babesia duncani (WA-1). While the photos are interesting and educational, I didn't take the post to mean no one will ever get better. I'm better. I imagine treatment successes and failures are really individualized. What works for one won't fit all, and the presence of other infections could complicate/prolong treatment. Make sure you're in the hands of a good LLMD and take heart. Sometimes more than one round of treatment may be required because it IS tough to put down. But success comes to those who fight!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
As I said before, the reason for posting that thread was to show how unreliable testing is, and to relate to everyone that feeling good does not mean that you're cured. But it also doesn't mean that you're not cured, because feeling good goes hand in hand with being cured.
You should NOT take my Babesia thread to mean that there is no cure for it, because that is not the tone of my message at all. What you should get out of it is that Babesia can be very hard to cure for some, and that testing is VERY unreliable!!
People need to understand that an undiagnosed Babs infection can be an underlying reason for little improvent in progress. I see a lot of posts from people that are very frustrated in trying to make some headway against Bart [or bartonella like organism (BLO) ]. Babs could be the reason. So don't be sure that you don't have it just because a blood smear test didn't find it! Am I saying that it's always the reson....absolutely not!
You should also be aware that Malarone has not been proven to be as effective as Mepron. My experience is that it is not nearly as good. I quite possibly would have been cured by now if I had used Mepron in combination with all the other stuff that I used. But then again, I have talked to people that have taken the standard course of Mep for over a year, and have used multiple other drugs and/or herbs in combo, and still have not cleared Babs.
There are a lot of different factors for each person that play a part in getting rid of any tick born infection, the most important factor being species. I suspect that I have WA-1 Babs because I got it in California, and because mine has been hard to clear, but that's just an assumption.
You should also be picking up from reading and researching the board here that there are a number of success stories in regards to Babs. Most of the time in my observation it is because of a higher dose of Mep and/or Zith.
I tried some different protocols for Babs because I wanted to find a less expensive way of clearing it other than the very expensive double dose (triple dose in some cases) of Mepron. Three bottles a month is more than insurance companies are willing to pay. I already pay $200 a bottle after insurance, so three bottles a month would cost me about $1400 a month out of pocket.
I don't believe that Primaquine is the answer. I've experimented enough with it in higher than normal doses to know that it isn't a miracle cure for Babs, especially at the one pill a day dose that groovy is taking it at. He took it for almost 12 weeks the first time and felt great during Tx and for a month after stopping. But then he relapsed. Now he thinks that adding a few more weeks is going to be the answer........I seriously doubt it. I do believe that it is a good drug to use at the end of a high dose Mepron protocol just to mop up any remaining Babs stages that might have escaped the Mep. But the CDC revised the dose to 2 pills a day instead of one because it wasn't working at the lower dose.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Micul, you haven't answered a more pertinent question. Maybe there are a few maltese crosses in a picture or two, but the blobs I see in other cells, who knows what they are. Why don't you take your slides, and pictures, to a good pathologist at a hospital and get some feedback?????
It's interesting you have set up your own microscope, but you aren't a pathologist, microbiologist, etc.
In addition, I suspect the reason babs doesn't clear is that like malaria it may have an intermediate lifecycle form that isn't being addressed--for instance in the liver, with tetracycline....etc.
So you may kill some forms with these heavy hitter drugs, but are missing one stage, and where it resides.
Maybe it's not the liver--that's just how it is with malaria.
Thus it isn't that you've got an impossible-to-clear infection, it's that you're missing one stage of its lifecycle.
We've all known for quite a while that testing is unreliable, and treat according to symptoms--clinical diagnosis. Treat the person, not the tests.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
posted
babs is a b*tch. really, i totally agree. point taken that many patients' cases of this insidious, elusive bug go overlooked or under treated.
to make matters worse, when babesia is only partially treated -- clinical symptoms tend to recur in a sort of muted mutation of the original set of symptoms, making it hard to track or identify.
i do believe krause still has the best research on the bug available - that said, there is woefully little available on babesia. vet medicine has the most useful information on it's life cycles, and probably the second best researcher to krause is our own member - bpeck. that's who i learned from to ultimately clear my babesia totally.
i do also believe that other co-infections will not clear while babs is present, but that babs without the other infections can be cleared by a functioning immune system.
i had pcr positive babesia microti, a raging case symptomatically. very severe. who knows whether i had another strain as well, at that time the wa-1 test was just being developed at igenex.
i also had pcr positive borellia b., bartonella hensalae and mycoplasma fermantans, with a few strains of candida thrown in for fun.
i had months and months of mepron and zith which dampened the symptoms but ended up creating a rather "sub-clinical" presentation, tried some clindamycin which did nothing.. then went hard core with artimisinin, using a few courses of riamet and then my own research-based pulsed therapy of artimisinin, following and concurrent with treatment of the other infections and intensive immune system "support".
it's been gone for roughly four or five years now. not one single symptom.
it can be done, but you do have to be very diligent and the docs will often give up on it well before it's taken care of.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Yes--Mo--Barb was the one who reasoned that, like malaria, it would have a liver phase, and she added tetracycline if I recall.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
oxygenbabe, do you think minocycline would do the same job as tetracycline for this purpose?
And just so everyone knows, I think groovy2 had mostly, if not completely, beat his TBD's and then was reinfected (rebit, and got another bullseye) at one point. I don't think he "relapsed" in the true sense of the word, unless I'm mistaken. He did start to see a small tinge of sweats appearing during the day or something recently, so then he took some primaquine or something again and it knocked it out.
My facts on that might be slightly fuzzy, but I have been following his posts and have communicated with him, and that is how I understood his story to be. He also said that you need to use Primaquine and Chloroquine together, you can't just use the one and expect it to do the job. His posts are on Lymenet...so anyone can go back and read them.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I don't know. Barb specifically used tetracycline I do remember that, but she was going on the malaria model. She did get better so maybe she was right.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
posted
I believe there is indeed some worry that there can be chronic babesia in there even after remission. I cannot ever give blood again, because I have had babesia. (no doubt there are cases of lyme being transmitted through the blood supply too, but it doesn't seem to bother them I had lyme..).
I hit the babs hard with artimesia, artimisinin, atovaquone, and garlic, and was on doxy and clarithromycin through that, too.
I will say, though, if there's any babesia left it's a very weak strain that my immune system keeps in check even without a spleen! (Babesia is OFTEN FATAL for those with no spleen) ...so I do think I've nailed it completely, actually! So don't by any means give up hope. Keep trying new things, guided by experiences you hear about, and work with your doc.
DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
| IP: Logged |
posted
You're both wrong, and it was Doxy that Barb took.
Hoosiers; you should get your facts straight before you start flaping your gums.
If you go back and read his posts, you will see that the second bite happened quite a while ago. Then he went on 12 weeks of Primaquine, and then he relapsed after that, after being off of it for a month.....sheesh.
It just amazes me how much people miss when they read posts! But to make it worse,they carry what they believe are the facts to other threads, where even more people get misinformed.
If you re-read my posts, you will see that I took way more Chloroquine than groovy ever even thought about taking. He only did the standard 3 days...I did it every single day of the 14 day period. And I added high dose Clindamycin and Artemisinin to that!!
Next time check the facts yourself first, instead of saying what you think may have happened!! As you can see, I have an excellent memory and knew where to find this old post. I understand that a lot of people here do have cognitive problems, but it doesn't excuse them from making false accusations! Research it next time yourself before you put it in writing; before making a fool out of yourself.
quote: bpeck Frequent Contributor (1K+ posts) Member # 3235
Mo has given you guys some excellent advice. I am the BPeck she refers to in her posts.
I did a ton of research on Babesia in the Thia literature, and Vet Med. before deciding on Babesia therapy.
I do not have a spleen and I worried about Babs killing me before Lyme did.
I tested positive for Babs, & already had a mis dx of heymolytic anemia (destroyed RBCs), evidence of RBC fragments, and a history of elevated temps and fevers.
After I educated myself on the available therapies for Babesia, I settled on the 3rd world 5 day therapy of b-artemether/Doxy for Malaria. b-artemether is a prescription drug, and not a supplement, and there are risks associated with it (5% death rate in some instances of complictaed malaria) that are not associated with the US FDA approved drugs for malaria.
My 2 Drs. were not supportive of this decision (understandably, as they can only prescribe US FDA approved drugs). I did this on my own, although they did monitor my blood periodically while I was on the therapy, then while my body was clearing the parasites.
I expected fever during therapy, but instead experienced something very near hypothermic shock a few times during that 5 days. And it was necessary to almost fast for those 5 days, as iron interfers with the drug (and iron is in absolutely everything you eat).
It was sucessfull for me. I think alot of people don't beleive me when I tell them that a 5 day therapy that cost me $35.00 cured it - but it did. No more elevated temps, no fevers, so symptoms, and no periodic anemia. No relapse and it's been 2 years since my therapy.
You'll have to be creative though if you want this therapy. No US Dr. can prescribe it.
Barb edited for spelling by bpeck
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Okay, doxycycline.
Still, the basic idea is a good one.
Have you tried Barb's method, Micul?
But anyway you should show your slides and pictures to a pathologist. You really should get a professional opinion.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I'm interested in the thought that bartonella/BLO can't be cured if babesia is present. I had heard/read that Lyme wouldn't go away if babs was there, but not bart.
This describes me. We have treated Lyme and bartonella for 2 years. No positive bart test, but highly symptomatic for it still. Babesia has been under the radar symptomatically but we knew I had it (no positive test, just clinical diagnosis). I thought it would slink away when the other two were subdued.
Maybe babesia is the x-factor for me? I think untreated bartonella is the x-factor for a lot of folks but maybe not me.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Micul, exactly what is scary about your slides? Wouldn't it be scarier to have symptoms and perfect blood? Or scarier to find it in every blood cell?
Anyway maybe you should try the artemeter/doxy. Just a thought.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
posted
It was scary to see just how much babesia was still there after feeling so good, and investing so much time and money. I had no idea at the time that Malarone did not absorb as well as Mep. I was under the impression that 3 tabs (750 mgs Atov) would be stronger because of the additional drug in it, but it wasn't (I took 6 tabs a day = to 2 tsp Atovaquone).
I knew that Bart was still there, but I didn't have any idea that it was as bad as the slide showed. I didn't get much sleep for a few nights after that...that's why I refer to them as scary.
Of course it's better to feel good even though they're still there. I'm sure that I wouldn't feel good for long though if I would stop treating.
I have used Doxy quite a bit over the years. It was very effective in the beginning, but I used it as a monotherapy, and it has lost its effectiveness against my bugs. I do plan on using Artemether in a high dose Mep protocol in place of Artemisinin just to see what happens, but I don't think that Doxy would work for me anymore
Besides, Doxy interferes with Atovaquone and reduces its effectiveness up to 40%. I don't think that it's a wise choice in a Mepron combo.
I did do a full course of Riamet about 3 weeks ago, just before starting an additional 14 days of Primaquine/Chloroquine/Clindamycin. It didn't do much at all for me.
But it was 1 month out of date, so that might have had something to do with it. Usually drugs retain full potency for up to six months after expiration.....this is according to my pharmacist. So I don't know that it was up to full potency or not.
CD...I wouldn't say that it's impossible, it just makes it that much more difficult. So do biofilms. All this stuff plays a part. If you did have Babs, I think that it would probably still be there.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
| IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I used several bottles of Mepron (1 tsp twice a day), but didn't seem to get anywhere until I doubled the Mepron and added artemisinin (100 mg capusles by Nutricology..7 caps twice a day).
I took azithromycin with each (500mg twice a day) and Septra DS (1.5 tabs twice a day).
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Micul, I think if you go back and read what Hoos posted she said that her facts might be a little fuzzy, and that anyone could go back and read Groovy's posts. She didn't state anything as fact.
Maybe you've forgotten that this is a LYME board - most of us are extremely sick and suffer from nuero Lyme, which leads to forgetfulness.
Maybe you could try being a little more considerate of that before you go flapping your gums.
And by the way, since you seem so hung up on perfection it's "flapping" not "flaping".
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Micul, the doxy was to get an intermediate stage. Might as well try Barb's protocol her way. My ex hyperbaric doc, a smart lady, learned microscopy also. Riamet was only temporarily effective.
I hear Dr J feels some need maintenance and you may be one. He gets them eventually to one week a month.
Did your pathologist confirm babs and Bart? Myself, I'd keep working with one.
Again I feel the problem is we are sloppily applying malaria drugs when they may be only partially effective and we are not treating the whole lifecycle.
LL I agree Micul has been somewhat out of line. She feels helpless, scared and angry. Her approach (posting photos and closing the thread and disabling PM upset me but now she has answered here) was a bit inconsiderate. OTOH her info on doing your own microscopy is useful. Unfortunately we don't see any spirochetes this way I guess. Also she could try herbs like cryptoleptis and let us know if it works at all.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
posted
i forgot to mention in this discussion that i had my blood read with dr. bradford whilst he was teaching a former ny hyperberic doc microscopy (may be the same one you refer to oxygenbabe).
this was years ago, and post lots'o'mepron and a short clindamycin run. i had maltese crosses at that time, after all that tx, and had very much dampened babesia symptoms, but did not feel "well".
i have to say i also had "strings of pearls", what seemed like millions of unidentified tiny "swimmers", and blobs of what bradford thought was candida and mycoplasma floating around in the blood at the same time. plus my cell walls just looked sickly and crinkled.
pardon my non-scientific description, but my blood horrified me. it just looked sick and polluted.
i guess that is an old post by bpeck, don't know if she still comes on board - but she spent allot of time helping me navigate my riamet tx. like her, my LLMD could not "sign on" with my decision, but i did use my labs being run for other purposes to follow what my lymphocytes, neutrophil, basophil and eosinophil cells were doing.
it was pretty amazing as those readings matched symptoms in response, in patterns that were distinctly different from my usual counts. i have a spleen, and did not go into hypothermia like barb -- but at the time my most reliable babesia symptom was unrelenting, unproductive, daily low grade pm fever.
for the first time in years, that fever pattern changed entirely, it spiked very high on day three of riamet, than gradually reduced to NORMAL, all day.
barb cautioned to watch for a return, as babesia - i firmly believe -- does have a liver (or other organs) stage from which it spawns.
sure enough, my old babs fevers returned after a couple of weeks.
because of my symptom response and blood work, i absolutely knew the riamet had a distinct effect.
i assumed there was spawning occurring, since my case was so severe and long term -- so i chose to do riamet again. same things happened, and it returned again. did riamet one more time. (i think tx's were spread out about 3-4 weeks in between. i did not want babs to have much time to repopulate blood.
the way artemesia works is it has fast blood clearance, but cannot get into the liver so easily. barb used the doxy for this, i was on minocycline - and riamet has the ingredient (name ecapes me) included to get the malaria liver stage - so i debated whether i really needed the doxy (barb used pure form of artemesia - NOT riamet) but i did switch to doxy for two weeks post riamet each time, just in case.
in any event, the third riamet course was again followed by a relapse.
my theory then was that artemesinin can clear the blood quite effectively, so i thought to continue "killing" babs in the blood stage repeatedly, hoping to reduce the load until my own immune system could take care of what was left. (very loose description of my thinking).
so, i researched holley pharmaceuticals work, got their papers on work in cancer and malaria, and how artemesia works. ie: the blood concentration decreases greatly after three days, reducing by at least 50%. plus, i figured it's presence in the blood would cause the babesia "spores" to remain sequestered.
based on this info, it never made sence to me to take artemesia continuously. so i decided to pulse it, three days on, four days off. -- after three days, the blood concentration of artemisia returns to full potential.
i did this immediately following my three riamet courses, for maybe four or five months.
my fevers would go up and down with the therapy, to eventually the last three weeks remaining at normal. (i also had a neck pain specific to babs that went along with the fever in response).
i believe my immune system eventually did take over, and it must be said that throughout these months and apart from this treatment, i decided to go off all tbd abx treatment (i had been on abx's for years, and they did bring improvement, but not full wellness).
so, near the end of my months of this treatment, i had begun hard core work on detoxing my body and strengthening my immune system. so, i'm sure that and having a leg up on borellia, mycoplasma and bartonella at that point helped this therapy as well. or, who knows, maybe artemesia helped the other infections. nobody really knows enough about any of this.
this is sloppy recount, i wasn't expecting to write on this today, and i have allot more to do for my son right now, but the subject fascinates me.
it was more complicated than just taking riamet. i assume the archives are gone (??) which is a shame because bpeck had her research and therapy outlined here. not only is the blood concentration of artemesia and the life cycle of babesia to be considered, but barb also followed the theory regarding iron in the rbc's and artemesinin's attraction to it.
ie: while on riamet; my days "on" artemesia pulsed; i would eat a strictly no-iron diet so the artemesinin would go to the rbc's instead of the food iron particles in the blood. there are also med contradictions that you have to research, i believe i went off my other abx's during the riamet courses.
i wonder if one needs riamet to do what i did, i can't know because i did use it first. i'm glad i did because i had a bad case, and i also learned the potential of artemisia from the therapy.
what was most interesting was holley pharm's papers on cancer, malaria, artemesinin, iron loading and "gearing" the art therapy toward blood (in malaria) and toward tissue in cancer. ie: (and loosely again) in cancer they will load the patient with iron to get it into organs, and use much higher doses of artemesia.
there is allot of potential with this drug, if it could be researched as a babesia treatment. i think it's really our best bet, but they aren't even researching babesia in any real way that i know of, much less it's treatment.
if i have time and remember to do it, i should try and find my old notes that included what i learned from barb, holley pharmaceuticals and the makers of riamet. i just can't get into that kind of digging at the moment.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Mo thanks for your great info. My doc recommends Holley Pharmaceuticals brand (maybe they all do now?) and I think what you're saying makes good sense.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
micul,
I find the way you are speaking to me pretty offensive. I said my facts might be fuzzy. I feel like I was deliberately trying to come across as.....this is how I remember it, but I could be wrong. I was hoping people would come in and correct me if I was wrong.....just not with the intent of attacking me personally, because what does that accomplish?
I spoke with Jay on the phone about a month ago. Maybe I misunderstood him when he was talking about his most recent bite?
But still, I'm pretty sure Jay (groovy2) took 25 days straight of chloroquine. I have also emailed him once or twice about this. I'll go check my notes though.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
micul,
Okay, chloroquine comes 25 in a bottle....it looks like Jay (groovy2) told me (I was writing this as he was talking) that he took Chloroquine for at least 14 days straight. I wrote down "Chloroquine: 14 days."
I have never read any of your posts except these recent ones, so I would not have made up those numbers.
So it seems like you must be mistaken if you think he only did 3 days of it. Maybe you should check YOUR facts.
Posts: 4590 | From Midwest | Registered: Jun 2008
| 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!
![[woohoo]](graemlins/woohoo.gif)
Printer-friendly view of this topic