posted
I would like to hear from anyway who was on treatment for Babs and relapsed a lot.
I was treated for 3 years for lyme on and off and finally Dr. B picked up the Babesia in me last May. I was on Mepron/Zithro/Art until November then Malarone/Art/ Levequin (for Bartonella also)until January. I went off the Babs meds and went down hill quickly- horrible feelings, fatigues, chills, and anemia now.
Dr. did another Babs tests through Igenex and the FSH and IGM came back positive again. Has anyone been on multiple courses of the Babs treatment and got better? How long? I have a feeling I'm in for the long haul. Thanks.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
| IP: Logged |
liz28
Unregistered
posted
Yes, I have this problem, too. The only drug that was able to stop it was primaquine, a malaria drug that is the malaria version of a "cyst buster." Unfortunately, I was only able to get two weeks' worth of it, which temporarily cut my babesia symptoms by 90%. But it's going to take a lot more than that to finish the job.
You are not alone in your experience. Honestly, it looks like the vast majority of longterm babesia patients can't go off mepron. This theory (admittedly superficial and non-expert) got some backup from a recent conversation I had with a local malaria expert, who is firmly in the conservative Lyme camp. He said "real" babesia is gone after seven days of treatment, and he's treated hundreds of patients, so perhaps we are dealing with a new species or variation thereof. If that is the case, this may be an all-or-nothing scenario, just like relapsing malaria--you either treat the disease completely, or it won't go away, but will just hum along on a lowgrade level.
Also, many babesia patients receive drugs which are being scrutinized for causing drug resistance in the malaria community. Chloroquine (a close cousin of plaquenil) has caused a major resistance problem in Africa and Asia. I was on plaquenil for two years, and now nothing works on my babesia except high doses of mepron combined with artemisinin supplements. And that's only barely holding it back.
I'm currently looking everywhere for primaquine, but it's a tough drug to get in the U.S. It is legal, and every pharmacy knows about it, but it is officially prescribed to cure "plasmodium vivax," the most prevalent relapsing form of malaria, which doesn't turn up here that much. To its credit, the CDC keeps a beady eye on any malaria that turns up on our shores.
Almost everywhere else in the world, it is taken as a malaria prophylaxis, or preventive drug you take on a daily basis. It was also frequently used by AIDS patients prior to the development of drug cocktails.
This is a scary topic--the current thinking in the Lyme community is that you can't fully cure Lyme disease unless you have gotten rid of babesia. But if our current babesia treatments aren't working...
After my latest relapse, I did a frantic Lymenet search to see how people got well. It seemed like many people either took mepron indefinitely, also citing their commitment to the "long haul," or stopped taking it, were in remission for a few months, and then relapsed. The lucky souls who had the short-term babesia really did get well after a short course of treatment, and did not take mepron for months and months before being cured. (Remember, this is my individual take on reading these posts. By all means, please do your own reading and make your own informed decisions.)
Please do post if you choose to try primaquine with Dr. B. That's partly for personal reasons--he might be my last hope--and also to see if others have a strong response to this drug. One person's experience does not a cure make.
IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Have you considered adding in immune boosting treatments and retreating? I recall a case (letter to a journal) where a man with lyme relapsed after rocephin, and then on another course of rocephin plus IVIG, got well.
You might see if you can get IVIG along with your next course of anti-babesia meds. I think lyme plus babs, perhaps bioweaponized or else mutated or both, synergistically generate toxins that suppress immunity.
Other immune boosting treatments include transfer factor, proboost, frozen thymus peptides (atrium-biotech), and I think there is a mushroom product being used with hep c...it has 7 mushrooms in it, I think.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey hides1
I asked the same question recntly and this is the thread and the answers I got:
If my babs proves un movable I am consider primaquine or rimamet- But I don't think rimamet can be had in the US. And the primaquine has some seriuos warnings. Be careful
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
liz28
Unregistered
posted
Yeah, Dana had a great point. There's two important primaquine warnings.
The first one is that you have to take a blood test for something called G6PD deficiency. It's found primarily in African American, Middle Eastern, and Sephardic Jewish people, especially men, who have a genetic history in malaria-endemic areas. The deficiency was originally "developed" (i.e. selected for) as an adaptation which partially protects against malaria. But if you do have this deficiency, you must take primaquine at very low doses.
The second warning is that one should definitely take certain supplements along with primaquine, since it will affect your red blood cells: folic acid, B complex, fatty acids, liver support. The first week I took it, I was wiped out. Then I added these supplements and felt much better.
Please allow me to add a disclaimer, that I have no idea if this would work for everyone, or will even finish the job for me if I can reorder it. It's just listed here as a possible option.
IP: Logged |
posted
Fatigue, chills, anemia, burning, sweats and more are also symptoms of adrenal fatigue.After three years of abx(many combos), I took a three week break and thought babs came back strong.
I am 5 days into isocort/iodine for adrenals / thyroid and starting to feel much better. Just a thought...kt
Posts: 740 | From BC Canada | Registered: Mar 2003
| IP: Logged |
posted
I was treated for Lyme and babesia for 4 1/2 yrs. I took NUMEROUS rounds of clindamycin/quinine for the babesia. Never did take mepron/zith. I also took artemisinin.
Babs now seems to be gone, but I also Rife for Lyme and babs now.
Don't give up after two rounds of treatment. It could take a yr or two at least.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
any of you doing milk thistle at the same time as mepron etc?
posted
Thanks everyone for their information. I am back on the Mepron and Zithromax but not at a higher dose just what I was at orginally. I will have to ask more questions when I see Dr. B's office on Mar 20.
My Igenex IGM for the Babs was very high 1248 so I think I have a LONG LONG way to go. It's such a shame 5 months of Mepron and 2 months of Malarone did basically nothing!
I was interested in the Milk Thistle issue because I took that all along my previous therapy. So I'm going to cut down on that a bit and then ask Dr. B.
I'm trying to be hopeful but this is just really depressing!
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hides1
I would be interested to know how high a dose af arteminsisin you where on?
I upped mine the last two go rounds and think that it hit it harder.The herx's where alot stronger.
But my only noticeable gains so far are a more normal body temp. Not so much fever or chills. But hey, it's a start.
If you can tolerate it ,I would ask your LLD if you can possibly up the art.
Take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
suki444
Unregistered
posted
Hi Hides1
We have the same doc, I too am seeing him in March as I will be 5 months into this course of treatment. In 2003 I did about a year of Mepron/Artemesia/Azith and sometimes with Bactrim, latterly going up to 3 teaspoons a day.
I then went on the MP and 7 months in, my Babs came back full force ..then it took about three bottles Mepron + Ketek to get it under control.
However I got the cold in Oct. and my symptoms came back unbearably...could hardly breathe..this time it is taking much longer to get functional again
I asked how some people seem to get rid of it so easily and he said it just goes dormant.
I find it hard to tolerate Artemesinin and can't do more than 2 tablets a day.
I think his approach is to step up treatment if you plateau...i.e. Mepron with Ketek, Mepron with Flagyl+ macrolide, Malarone+ Ketek (as it has two antimalarials) etc. Artemesia/Artemesinin too.
I sent him the article on Milk Thistle but he has never told me to stop taking it on Mepron.
Please let us know how your consult goes as a few of us are having difficulty with resistant Babs.
Liz28...A vet working with AW viewed my blood and saw Babesia type bodies but I tend to think there must be so many strains of it, and differences in how virulent it is. European strains of Lyme are ancient and seem more virulent so perhaps the Babs is the same?
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
I snuck myself back on to Mepron...and herxed.
I also have been treating this stuff for forever...it sucks.
Ordering more Artemisinin next week.
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 |
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!
![[Frown]](frown.gif)
![[Wink]](wink.gif)
Printer-friendly view of this topic