Jamers
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posted
So, Im just wondering how long it took individuals to get rid of this babesia beast.
Also, can you tell me what kind B. Duncani, or B. Microti
And, what meds you took to kill them?
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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TF
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posted
For me, I treated babs microti for 11 months. The last 5 months I was symptom free, but doc would not let me stop meds because he won't let anyone stop meds in winter. Says winter is a stress on the body, so stopping treatment then could lead to a relapse.
I became symptom free as winter was approaching, so I had to stay on my meds for 5 more months until spring arrived.
I had already treated lyme and bart. Babs was my last disease to get treated.
I took Bactrim DS and artemesinin Friday through Sunday of each week.
Besides meds, I took supplements (including Transfer Factor for low white blood cell count), ate a lyme diet, no drinking or smoking, and did the Burrascano 1 hour weight lifting program every other day. My doc said I would NEVER get rid of lyme if I didn't do this weightlifting program.
Just want people to know that the whole story is not "What meds did you take?" We often think that is the main thing, but getting rid of this disease is more complex than that. I almost fell over in my chair when my doc told me the weight lifting program was essential or I would never get well!!
Completed treatment 6 years ago. Still symptom free, enjoying my life.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Jamers
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posted
Thank you TF. Im on Mepron and Art. only. I take both 3 weeks on, 1 week off since I cannot take Zith or Biaxin. I haven't seen anyone do that here with Mepron so I hope it works.
I have B. Duncani and have been treating for almost 2 months. My doctor is adding in Bactrim also.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
Most doctors believe 2-4 months is suffice if treating with Mepron/Zith. That has been proven true for me, I had Duncani confirmed by FISH and antibody titers
Posts: 306 | From NY | Registered: Sep 2010
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Jamers
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posted
NYbasketball-Did you notice a huge difference in symptoms in a certain amount of time? Since treating for almost 2 months I still have air hunger.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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nefferdun
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I have been treating babesia duncani since the end of November. I am glad to hear ny got better because duncani is very resistant.
I was given Mepron/zithromax. It is believed zithro keeps the babesia from becoming resistant to Mepron. I had previously been on Bactrim DS, artemisinin and zithro (or biaxin) for about 9 months but was going backwards.
After treating four months with Mepron/zithro I added in left over Bactrim DS. It didn't seem to do much and I could not sleep on it so I quit after a month. I had also added artemisinin - 400mg twice a day but it also did not seem to make much difference. I think the babesia was resistant to both those things.
So I ordered artesunate and have added that in 4 days a week. I am going to try some left over plaquenil. When I tried to take it before for lyme cysts I had such a strong reaction I quit. It might have been the babesia which I did not know I had at the time. Plaquenil is antimalarial.
I am going to my GP in a couple of weeks and need to boost my treatment so I am looking for ideas. Another possibility is a round of coartem.
So I am better, going on six months, but not well. I still get hot flashes and sweats and my stamina is affected. But lately I have been able to do more things - gardening, riding horses etc. I hope this is enough exercise as weight lifting has never been my thing. I do need to throw out hay though and muck manure.
It feel good not to just stare at everything that needs to be done and not be able to do it. It also feels good to have some motivation, to be able to set a goal for myself and feel some enthusiasm about it. I was like a zombie before.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Only some believe Duncani is resistant to treatment. Many patients incorrectly attribute their remaining symptoms to Babesia, when in fact it is actually gone.
I reccomend monitoring titers or running FISH tests periodically if you are able to financially. Nefferdun you are probably done treating Babesia.
jadamns- I felt just a little bit better after about 2 or 2 and a half months nothing major though.
Posts: 306 | From NY | Registered: Sep 2010
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t9im
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posted
Our daughter has been on Mepron and Zith for just under a year (started mid May last year).
Her LLMD pediatrician indicated a minimun of 8 months for Babs.
I think she has been symptom free of the Babs for the past couple of months. Hard to tell but stuff like fevers, sweats, headaches, vertigo, disappeared over the winter and some of the others like bone pain were not noticed at last months appointment.
She never tested positive but had all the symptoms last year. Not sure if its a different strain not on the tests.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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seekhelp
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posted
I've had horrendous fatigue that doesn't budge. No stamina whatsoever. If this is Babesia, I didn't put a dent in it. I tested positive for Duncani via Focus Labs IgG titer. I never did the FISH test.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Maybe you were one of the lucky ones who caught your infection early -- can't remember. But in my opinion the reality is that the longer a person has had babesia the longer and harder it will be to treat.
Hubby is currently trying the IDSA treatment of quinine (qualaquin) and clindamycin -- still considered the gold standard treatment for persistent babesia. But he also added in malarone and even IV flagyl to the mix plus cryptolepis and some other herbs. Did two 10 day cycles, a 9 day cycle and a 21 day cycle. In my opinion we are far from finished treatment.
His WA 1 titer has decreased from 1:2048 to 1:512 after the first 3 cycles.
Even the IDSA says that 10 cycles may be required and it could take years to clear babesia in immuno-compromised patients. But of course they do not believe that lyme and tickborne disease patients are immuno-compromised.
See the article: Persistent and Relapsing Babesiosis in Immunocompromised Patients
So far hubby has had 3 ER visits and 15 days in the hospital as a result of his babesia treatment.
I have very little confidence in the FISH test myself unless one has received no treatment. Even Dr B says that babesia is very rarely seen in blood slides after the first couple of weeks -- it goes to the tissues and the bone marrow etc etc.
The best time to get a positive bloodslide would be right before a person experiences sweats or fever -- but how many people have a test kit and can get to a blood lab in the middle of the night when babs generally multiplies?
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
P.S. Any LLMD who treats babesia for less than 4 - 6 months minimum is not following Dr B guidelines.
Hubby has been sick for 10 years and may have 1 or 2 other bloodborne parasites in addition to babesia duncani -- no one can say as the protozoa seen on his bloodslides can not be DNA sequenced.
jadams -- My advice would be to treat until the symptoms are gone. If you plateau on your current meds then I would add in another med or switch around. In hubby's experience babesia treatment that is bacteriostatic may make you feel slightly better in the short term, but if you do not have at least a temporary increase in babs symptoms then the meds are probably not bacteriocidal. This advice is based on treating babs off and on for over 7 years with many different meds.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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RZR
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posted
quote:Originally posted by nybasketball212: nefferdun-
Only some believe Duncani is resistant to treatment. Many patients incorrectly attribute their remaining symptoms to Babesia, when in fact it is actually gone.
I reccomend monitoring titers or running FISH tests periodically if you are able to financially. Nefferdun you are probably done treating Babesia.
jadamns- I felt just a little bit better after about 2 or 2 and a half months nothing major though.
My IgeneX fish test was negative after 3 months of Mepron/Zith, Bactrim DS. I still have hot flashes/sweats and cough. LLMD increased Mepron and I had a pretty tough herx. So, for me FISH test was not accurate.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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Jamers
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posted
My LLMD said that 'most' of her patients do get well in 4-6 months. I guess I should just treat 2 months after all symptoms disappear. Ever since I started treating my air hunger has been really bad so I'm guessing Mepron and Arteminisin are bacteriocidal?
Bea- what are Dr. B's guidelines for the amount of time treating Babesia?
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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BoxerMom
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I have B.microti (plus Lyme and Bartonella).
I was infected for 18 years before my diagnosis.
After 12 months of treatment for Babesia and Lyme (mostly Mepron combos for the Babs), I was symptom-free for Babesia.
I then treated for Bart and Lyme for 18 months. During this time, I relapsed for Babesia.
The relapse came on very slowly, with only mild, intermittent symptoms. I got back on Mepron right away and the symptoms resolved. I discontinued the antimalarials for several months, and had a full-blown relapse. Rats.
I'm now back on Mepron/Zith/Artemisinin/Ceftin. I have mild herxes with each dose. My chills, night sweats, cough and air hunger have resolved. My hip pain, glucose intolerance and sleep apnea are severe.
I will treat until symptoms have resolved, even if it requires another 12 months.
I plan to do the "radical cure" for Malaria at the end of my treatment.
From Wikipedia:
Radical cure
Primaquine is mainly used to treat the P. vivax or P. ovale malaria. Once the parasite has been eliminated from the bloodstream, the remaining hypnozoites must be removed from the liver and this is done by administering a 14 day course of primaquine. This process is called a radical cure.
If primaquine is not administered to patients with proven P. vivax or P. ovale infection, there is a very high likelihood of relapse within weeks or months (sometimes years).
When attempting a radical cure, primaquine requires the presence of quinine or chloroquine in order to work. If primaquine is given alone, the cure rate is only 21%. It is not known if other antimalarials such as mefloquine are likewise able to potentiate the effect of primaquine.
nefferdun
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posted
seibert,
I caught in your post that when we are having a hot flash the babesia is multiplying - is that what you meant?
No one has ever written what causes a hot flash, that I know of. Mine are better but not gone.
ny, I do not know what else could be causing my symptoms other than babesia. Bartonella can cause hot flashes but I treated for that for a long time and the other symptoms of bart are gone. I also have loss of stamina. I can't risk quitting and starting over.
Boxer Mom, is primaquine dangerous? If not, why isn't it given more often?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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BoxerMom
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Here's the Wikipedia page. There can be serious adverse reactions to Primaquine.
It doesn't treat the RBC form, only the immature liver form. I think it's not used in Lyme treatment because of safety issues, and because it's prescribed after treatment, when the patient's symptoms have resolved. That's usually when Lyme patients discontinue antibiotics.
I don't know where I read about the hypnozoite form of Babesia, so I don't even know if it's confirmed that it has a hypnozoite form.
But I am sick of relapsing with this stupid microbe, so I am willing to be a guinea pig (to some degree).
This is the way one doc explained Babesia to hubby once. The red blood cells burst when babesia multiplies. If enough cells burst and the immune system picks up on this it can cause chills and fever because the immune system is attacking the cellular debris.
Many babesia meds work by trying to break down the cell wall and if the right meds are in your system when the red blood cells burst then the meds can kill the babesia parasites when they are released from the cells and before they can invade new red blood cells.
This is the reason treatment needs to last 4 months or longer -- the life cycle on red blood cells is about 4 months. By treating for 4 months then all your red blood cells should have been replaced and theoretically the meds could have killed off all the babesia in the red blood cells.
The problem is that many microbiologists think that babesia can also go to the bone marrow and liver and other places to hide and even killing off 100% of your red blood cells (that happens naturally in about 4 months time) will not flush out the babesia which is in hiding.
I definitely plan to try hubby on primaquine again, but think his load is still too high. He tried low dose primaquine and chloroquine back in 2007 (the low dose protocol from Liz28 posted on LymeNet) -- ended up in the hospital.
At that time he had not treated bartonella and in my opinion killing off babesia also releases any bartonella from the red blood cells and that can also make you very sick.
Hubby has added back Factive to his treatment meds to cover any remaining bartonella although we thought that was actually gone. There is actually one PubMed article which says that for babesia gibsoni in dogs a combo of doxy, flagyl and one of the fluroquinolones (think it was one used by vets -- not cipro, or levaquin or factive -- but they might also work the same way) -- the combo was 75% or 80% effective I think.
I do think there are probably combos of meds that might work when the meds by themselves are not strong enough -- really wish there was more research on babesia.
jadams -- It does sound to me like the mepron and art is probably working for you. I really think the dose needs to be adjusted individually for each patient and it probably works better on some strains of babs than on others.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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nefferdun
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Thanks Bea, you know your stuff. I don't get chills or fever - very rare - but I do get hot flashes every day/night and light sweating at times. So maybe this is my immune system attacking debris.
I heard somewhere that babesia can hide in the bone marrow which is why it is so hard to get rid of. That is depressing. Ehrichlia hides in the spleen and in dogs, it can be chronic and kill them. Bb of course forms cysts. No wonder we relapse.
I was reading about Primaquine last night. Another hopeful cure is Etaquine (tafenoquine) which is not yet available, I don't think.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Jamers
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posted
This is pretty depressing. I mean how many infections are this hard to 1) test for 2)Treat with so many meds 3) Relapse because you can't get rid of them.
About every tick borne illness. I don't understand how these infections are so crafty.
BEA-I think the mepron/art are working. I get BAD palpitations on Arteminisin, but not on mepron. I just pray it works.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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