I'm really interested in hearing anyone's experience with treating multiple babesia relapses.
How did you finally kick it?
I have been treating babs on and off for 3 1/2 years. I have both babs microti and duncani.
I think I'm on relapse #4, now. It's possible that this is #5. Yikes.
My history as best I can remember (posting thanks to groovy's suggestion):
Treated 8 mos the first time - used Mepron, Biaxin and doxy (I think) for 4 mos, then switched to Mepron, Ketek, and another abx (can't remember which) for 4 mos.
Relapsed after 4 mos (in the interim was on IV Roceph), and then treated for another 6 mos on Mepron, Zith, and Omnicef.
Another relapse within 4 mos, while treating Lyme and other co's.
Third time, treated 4 mos with Malarone, zith and another abx (again, can't remember the 3rd, sorry).
After the next relapse, treated with Mepron, zith, plaquenil for several months.
In the meantime, between these episodes, I have continued treatment for Lyme, Bart and other co's, using various combos - Bactrim is one that may have had an effect on Babs, too, I think.
Have not been able to tolerate artemisinin, so have not used it for any length of time.
I am in the midst of another babs relapse, and back on Mepron, Biaxin and Omnicef.
After a short Biaxin herx, I started the Mepron and just felt better and better for 10 days.
Now the herx has started, but I've never had a delayed babs herx like this before.
I really want to kick babs, and am starting to think that there may be a better combo of meds to try - since it feels like I'm spinning my wheels with the Mepron combos.
Can you offer any suggestions, or some hope??
Would love to hear from someone who's experienced these multiple relapses and finally kicked it - even anecdotal stories would be welcome.
Editing to add that we believe I was initially infected 20+ years before being diagnosed.
Posted by seekhelp (Member # 15067) on :
Do a search and look for Groovy2's recent post. THis person seems to be having major success on a totally different protocol than you're on. I don't recall the exact drugs, but the post is pretty new (within last 2 weeks).
Posted by cactus (Member # 7347) on :
Thanks, seek!
I haven't seen it, so will search now.
Posted by KS (Member # 12549) on :
Just curious as to how you know it is babs? Are you still testing positive or is it a clinical diagnosis? What are your babs. symptoms?
Posted by cactus (Member # 7347) on :
KS, the latest test results are not yet in, but LLMD suspects babs based on the following:
History of positive tests
History of relapses (with formerly neg tests becoming pos again once off babs meds for several months)
History of responding well to babs treatment (as long as I stay on babs meds, at least)
And symptoms (these are the ones that seem to arise with the relapses, and subside while on babs meds), no particular order:
Late afternoon/evening fever - 102 nightly sometimes higher Sweats, mostly night, some afternoon Heart palps, tachycardia Chest pain Burning hands and feet (peripheral neuropathy) Hands actually radiate heat Chills Muscle pain Right-sided headaches (severe) dizziness fatique vertigo can't catch breath edema fatigue, low stamina very dark urine
There are more, but maybe this is a good start, in answer to your questions.
Posted by micul (Member # 6314) on :
Groovy's protocol of Primaquine + Chloroquine is for after using the standard treatments. I don't think that it will work when used as the main attack plan. He's been taking it for over 4 x's as long as you're suppose to, and he really isn't sure of the outcome at this point I believe.
I saw somewhere else that there's someone that says they beat it. Here's a link to the page
Really think it's time to start looking at some new protocols, so this is useful.
Posted by KS (Member # 12549) on :
It certainly sounds like it is babesia you might be dealing with.
Just some thoughts:
Since I'm not sure what tests your LLMD is running, I'm just going to be making some assumptions here. You may want to ask your doctor or PCP to run some blood smears to see if you can confirm current infection with babesia. The only reason I suggest this is because antibody test and even PCR tests can be positive from previous exposure and are not indicative of current infection. Of course, the smears aren't fool proof either.
Another thought is to google Mepron and cholestyramine for babesia treatment. I don't know too much about it other than it is a treatment option explored by Dr. S.
The good new is that you are responding positively to babesia treatment so that part is a no-brainer...
Posted by cactus (Member # 7347) on :
Thanks, KS. I hadn't heard of using cholestyramine with Mepron for babs.
Or if I have run across it, I don't remember.
I will google it!
Posted by Vermont_Lymie (Member # 9780) on :
I have heard of people having success with clindamycin and quinine after babs relapses. Also, there is another herbal recommendation, cryptolepsis.
Posted by sutherngrl (Member # 16270) on :
Treating babesia with Malarone alone with no other meds and 1 month in I feel so much better. I treated the Lyme first and then began treating Babesia. I have been ill for 2 and 1/2 years and been treating for 7 months.
Posted by sutherngrl (Member # 16270) on :
Also want to add that my belief is that you can overwhelm your body with too many medications at once, which I think makes for a much longer recovery. Others will have different opinions; but for me lower doses seem to be the key.
Posted by cactus (Member # 7347) on :
Thanks, Vermont - I think clinda and quinine is looking better and better. And cryptolepsis as well.
Instinctively, I feel that if I just keep repeating the same babs treatment, I will suppress symptoms again and achieve a short respite while off treatment - then be back in the same boat 6 mos later.
Sutherngirl, I'm so glad to hear you are feeling better so quickly - that is great news.
Malarone did make me feel better, also - but again the symptoms came back within a few months of discontinuing it.
Starting to feel like I have SuperBabs.
Posted by sutherngrl (Member # 16270) on :
I am very nervous about going off of it. It is the only thing that has made me feel better.
I guess going off is the only way to know if you are really over it or not though.
Posted by cactus (Member # 7347) on :
Hopefully when you go off of it, you won't have the relapse experience.
Many people seem to successfully treat it without these multiple relapses, so there's definitely hope.
Posted by Brussels (Member # 13480) on :
I would try to add Noni tincture and/or cardamon powder to your treatment.
Just based on personal experience, after two babesial infections that kept coming back that looked like forever ...
For the ones who get relapse, getting rid of babesia is very hard. Getting to symptomless for me was easy, but once I was off treatment, symptoms returned and then fully blown.
The addition of Noni tincture did the job in my first infection. In my second infection, Noni didn't help finishing relapses. Somehow, cardamon powder did (yes, it sounds too simple, but I swear it did help).
Posted by luvs2ride (Member # 8090) on :
For some reason, my doctor, who is allopathic as well as CAM has chosen not to put me on the usual Babs drugs. I don't know why. At the time of my genetic test for my ability to detoxify (I suck at it) she stopped my abx saying "I have been poisoning you." I think this is why we are doing most everything alternative. I'm feeling great. So I am not complaining.
She did 7 mths of ammoxy, biaxin but no results. Symptoms did disappear early in this treatment and have never returned but the bloodwork remains positive.
Next she did 4 weekly IVs of MTE9 and after this I received a negative bloodtest. She wanted two negatives before stopping tx, but I misunderstood and stopped after the 4. 2nd bloodtest, babs was back (ducani).
She switched me to an oral herbal protocol which I am still on. Have been on it 3 mths and she just yesterday instructed me to stay on it 2 more months. Ok. She ran bloodwork but results won't be in for 2 weeks.
Yesterday she started me on the CBNS protocol which is similar to Cowden but not nearly as intensive or expensive. She expects me to herx on the Noni and/or the Samento. We will see.
I don't think this protocol is for Babs. She is also treating lyme, strep, mycoplasmas, CPN and she tested me again for H. Pylori. I have had HP twice and do think it may have returned again. That is not uncommon for that bacteria.
I continue to feel great and was hoping she would declare me in remission yesterday but nope. She could feel some inflammation in my wrists and ankles. I can't feel a thing.
Life goes on and I will post my results from the CBNS. I think I will be on it for 6 mths.
Luvs
Posted by CD57 (Member # 11749) on :
Luvs--what is CVNS?
Posted by sweet pea (Member # 6495) on :
Hi Cactus,
So sorry about your relapse.
I took Riamet for Babesia and I think it helped. I had to order it from Germany but did not need a prescription. The only side effect I experienced was a higher level of fatigue.
Dr. H. in NY was my LLMD at the time and he was ok with me taking it.
I don't know if you can still order it since the customs laws have changed since I took it, but I wanted to let you know about it in case you can find a source.
Hope you are doing well otherwise.
P
Posted by cactus (Member # 7347) on :
Thanks so much to all of you.
Brussels, I will check into the Noni.
And Luvs - I will ask my LLMD about your current protocol as well. Great info - thanks!
Sweet Pea, did you see the post earlier today about the possibility of Riamet here in the US? Good timing! Looks like that might be an option soon, too.
Posted by sweet pea (Member # 6495) on :
quote:Originally posted by cactus: Sweet Pea, did you see the post earlier today about the possibility of Riamet here in the US? Good timing! Looks like that might be an option soon, too.