posted
My dr says 4 months is standard. I don't want to take this antibiotic too long but want to get rid of babesia.
Posts: 415 | From USA | Registered: Jun 2012
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I say yes it is long enough.. mepron is very hard on the liver and that in itself can cause symptoms which can be confused for babesia. If there is no resolution after that long then try something else.
posted
My son did 4 months of this and is fine - his only babesia symptom before treatment was mild air hunger. Stopped treatment about 6 months ago and has not complained of any babesia symptoms.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Messa:
AT one of our daughter's LLMD appointments we had a conversation where he indicated a minimum of 8 months, our daughter was on it for 14 months.
I'm sure it depends on the babesia strain as well as the individuals immune system.
Good luck.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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gmb
Unregistered
posted
The theory is that the life of a red blood cell is approximately 120 days, so they threat for 4 months, minimum.
I was on mempron for 4.5 month the first time and five months after I stopped Mepron symptoms returned.
Round 2 Mepron started in Feb 2012 and after two months, then added Bactrim DS. In June 2012 we double dosed Mepron for another seven months. I stopped mepron in early March 2013 with greatly reduced symptoms, but still not recovered.
A week later I started Cryptoleptis, then another week added Sida Acuta. This either triggered a herx or Babs flared back due to stopping Mepron. I just added Anilia to the mix.
There's a lot of Mepron resistant Bab's strains in our area. Or we are fighting something yet to be discovered.
posted
I don't think it is long enough. Babesia is hard to get rid of, period.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
I personally would request a minimum of 6 months. I did only 4 and I'm not sure but I still have Babesia like symptoms... It's worth it in my opinion to just do it for a couple more months.
-------------------- 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
Wasn't for me and after 4 months on it i was so sick from it I had to quit. the anxiety and shakes were awful. now on malarone and bactrim.
Posts: 342 | From Philadelphia | Registered: Dec 2011
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posted
I have been on/off babesia treatment for two years (mepron + azith, then malarone + plaquenil + criptolepsis.
Honestly, I don't think 4 months is enough; however, with that being said mepron is hard on the liver and there are other treatments for babesia besides mepron, so it might be good to change treatments anyway due to resistance and being hard on the liver.
posted
I'm taking artemisia and crypto along with the Mepron and Zithromax.
I am still having the cold chills, sweats, fatigue, body aches, sore glands and palpitations.
I am so terrified I don't really have this disease and I'm putting all this medication into my body for nothing. And now I'm scared to take Mepron longer than 4 months.
I've been taking the Mepron for about 2 months. Shouldn't I be noticing a significant difference?
I thought I was doing better but I'm pretty bad again.
I never tested positive for babesia. My dr just said symptoms sounded like baba.
Lymetoo, how long did it take you to get rid of babs? I would like to hear how and how long it took anyone to get rid of babs.
Also I can't take bactrim. I'm allergic.
Posts: 415 | From USA | Registered: Jun 2012
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posted
I took mepron & zith for about 4 months and then doctor stopped it because he thought it was long enough. (it wasn't)
I still had symptoms, though, and my new doctor put me on malarone for about 6 months.
We recently stopped it, and my symptoms returned, so after a one month break, I am back on the malarone, this time at a higher dose. Too early to tell if it's helping yet.
Interestingly, I never got a positive on the Babesia FISH test - until last month (after 1 1/2 years of babs treatment)...
Posts: 348 | From NJ | Registered: Sep 2011
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posted
Bitten in Bergen, wow! I pray you will get rid of the babesia for good! Thanks for the info.
Posts: 415 | From USA | Registered: Jun 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
This is what Burrascano says about duration of babesiosis treatment:
"The duration of treatment with atovaquone combinations for Babesiosis varies depending on the degree of infection, duration of illness before diagnosis, the health and immune status of the patient, and whether the patient is co-infected with Borrelia burgdorferi. Typically, a three-week course is prescribed for acute cases, while chronic, longstanding infections with significant morbidity and co-infection will require a minimum of four months of therapy. Relapses have occurred, and retreatment is occasionally needed.
Problems during therapy include diarrhea, mild nausea, the expense of atovaquone (over $600.00 per bottle enough for three weeks of treatment), and rarely, a temporary yellowish discoloration of the vision. Blood counts, liver panels and amylase levels are recommended every three weeks during any prolonged course of therapy as liver enzymes may elevate. Treatment failures usually are related to inadequate atovaquone levels.
Therefore, patients who are not cured with this regimen can be retreated with higher doses (and atovaquone blood levels can be checked), as this has proven effective in many of my patients. Artemesia (a nonprescription herb) should be added in all cases. Metronidazole or Bactrim can also be added to increase efficacy, but there is minimal clinical data on how much more effective this will be." (page 24)
The very first sentence of the above quote tells you all of the factors that will determine how long you will need to be treated for babs. You also see the 4 month minimum treatment stated here. So, 4 months is the MINIMUM. That has to do with the life cycle of blood cells. Babesia lives inside our red blood cells.
In my experience, many people stop treatment too soon and have to retreat. Also, many are not on a high enough dose of atovaquone and so have to retreat. It is best if the doctor tests your atovaquone levels so that at least you know you are getting a high enough level to kill the disease. This way, you will not have to treat longer than necessary. Many doctors do not test atovaquone levels.
I have a friend who has both babesiosis microti and also babesiosis duncani. So, as you can imagine, her treatment will likely take longer than someone with only one strain.
My doctor determined when I was cured of babs (I had microti) based on the disappearance of babs flares. As soon as I started treatment for babs, I got a flare every 7 days like clockwork. My doc says that babs has a 7 day flare cycle and a 14 day flare cycle. So, I made note of each flare. At first, these flares were horrendous and totally debilitating, both mentally and physically.
After a few months, the flares switched to every 14 days. Eventually, I didn't have any flare symptoms whatsoever. That is the key. You have to notice even very mild flare symptoms.
For example, near the end of the flares, my only symptom on the scheduled flare day was an overwhelming need to go to sleep no matter what I was doing (driving, etc.). So, as long as I noticed that every 14 days, we knew that we were not done killing babs.
I reported to my lyme doc when I no longer had anything happen on the set flare days. Then, we knew were were done treating babs. (Babs was my last disease to treat. I had already treated lyme and bart and gotten rid of them)
Still, because of the time of year when I got rid of babs, (It was October or late October, I believe), my doc was unwilling to let me stop babs treatment. He said that you can't stop treatment when winter is coming on because winter is a stress on the body and can cause a relapse.
Therefore, I had to keep treating babs until spring!!! This was very difficult to do seeing that I was totally symptom-free, normal in all respects. Still, I did it.
That was over 8 years ago now. And, I am glad I did it. I treated babs for about 11 months all told, and the last 5 of those months, I was totally well.
So, it pays to have patience with this disease.
To motivate you to continue treating babs, I suggest you study babs symptoms and then carefully notice if you have them. If you are sure you have babs, then it is much easier to force yourself to treat it month after month.
Also, if you have not had the LabCorp test for babs or the Igenex FISH test, get them. Any positive test will help motivate you.
Burrascano discusses babs symptoms and babs testing on page 23 of his Guidelines.
Now, here are some notes on babesiosis from Dr. H.'s talk at a lyme conference a few years back. These notes may help you.
As you will see, today's cases of babs are more difficult to cure than when I was treating. Babs has become more resistant to mepron is what the doctors are saying. (Dr. H. is a recognized babesiosis expert. I understand that when Burrascano was practicing, if he couldn't clear babs for a person, he sent them to Dr. H. because he was better at getting rid of babs than even Burrascano.)
So, some docs are putting their patients on 4 babs meds at a time to try to cure them.
Notes from Dr. H's talk on babesiosis (2011 ILADS Conference, Toronto, Canada):
Indicators of bad outcome with babesiosis:
male sex, extremely high WBC
We see blood transfusion babesiosis in California. WA-1 is now in the Northeast U.S.. It is found along the entire eastern seaboard. It is difficult to get a positive test for it. LabCorp has a WA-1 test. The FISH through Igenex is also very useful.
He treats with clindamycin with azithromycin, also Mepron, then malarone. There is lots of Mepron resistance. So, he adds Septra (Bactrim). This works well. Also, he uses much higher doses of Mepron due to the Mepron resistance.
He uses coartem (which has Artemisinin in it) Dosage is 4 twice per day. Take at 7 a.m. and 3 p.m.; then switch to 7 a.m. and 7 p.m. It can be pulsed once per month.
You can�t combine this with any med that affects the QT interval.
Babs is spreading world-wide. Babs also suppresses the immune system (based on a study of b. microti)
Artemisinin is not as effective now as it was in the past. Use art when coartem doesn�t cure the person. He no longer uses ketek.
Beta blockers (blood pressure medicines) control these types of parasites. So, use them as an antagonist. We need a study on this. Heparin may also inhibit babs. Need a large study on this.
Curcumin (a herb)--he is now using it to treat babs. Published studies show it is useful for malaria.
Cryptolepis has been used in Africa for malaria. There is a published study in Ghana. It had a 93% cure rate (a 50% cure rate in 3 days; 90% cure rate in 7 days) You can get it at: www.woodlandessence.com
If adrenal function is low (patient has a low cortisol), they will not respond to antibiotics.
He told of a patient with intractable babs. They were treated for babs for 5 years and were not cured. Then, he gave them 1 teaspoon of cryptolepis 3 times per day with Byron White herbs. This is making the patient feel well. He hasn�t found any side effects with the cryptolepis. It may not be curative. It lowers the parasite load and strengthens the patient�s immune system.
Brucellosis also causes night sweats, so check for this in a patient with night sweats.
Use malarone for the patient who can�t clear babs. Low dose to maintain them.
We need new treatment options for babs.
All of my notes on this talk are posted on LymeNet here:
posted
Thank you TF. Ill read thru this info. I appreciate your willingness to help.
I was tested for babesia microti thru LabCorp. It was negative. I don't think I was tested for babesia duncani. It is very difficult to continue treatment because I have no real answers. Only a positive Lyme test thru igenex.
I don't know if I am seeing the wrong dr or if I'm onto the wrong disease entirely. My dr is treating bans because some of my worst symptoms are chills n sweats.
I haven't heard of a dr testing for atovaqoune levels. This is very interesting.
Thank you so much for all of this information!
Posts: 415 | From USA | Registered: Jun 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Well, as you can see in Dr. H's notes, brucellosis causes night sweats, so the doctor is to check for this if the patient has night sweats.
Also, you should advise your lyme doctor that you want the babs duncani test through LabCorp. Not all doctors know that this test is available.
My lyme doctor did at least 2 tests on me for babs and the same for bart. You will read in Burrascano that the tests aren't very good for babs. So, because of this, you have to do more than one. I had the FISH through Igenex and that was positive for babs for me. The other Igenex babs test was negative. This is very common.
Just let me tell you that I really had no symptoms of babs at all. A mild ("subclinical") case can be without symptoms. That's what Burrascano means when he says:
"It has also been reported that Babesia infections can range in severity from mild, subclinical infection, to fulminant, potentially life threatening illness. Subclinical infection is often missed because the symptoms are incorrectly ascribed to Lyme. Babesia infections, even mild ones, may recur even after treatment and cause severe illness. This phenomenon has been reported to occur at any time, including up to several years after the initial infection!" (page 23)
Because of this, my lyme doctor was really surprised when I tested positive for babs.
You don't say what part of the country you are from, but in my area (east coast, mid-Atlantic and north), virtually every lyme patient also has babesiosis. Out of all of the hundreds of people I have talked to with lyme in the east, only one has NOT had babesiosis. That's just how it is in the east. The ticks that carry lyme also carry babs.
You can read in Burrascano how common this coinfection is. So, often the best lyme doctors automatically treat all lyme patients for lyme, babs, and bart. They are known as "the big 3."
You can ask the doctor to treat you just for lyme disease if you like. If you have babs or other infections besides lyme, you will make some progress, but you will not get well. If you try to stop lyme meds, you will be just as sick as ever within 30 days IF you have coinfections.
If you just have lyme, it takes a few months for the lyme to make you sick again as lyme is a slow grower.
So, these are some of the ways to know if you actually have a coinfection or not.
Last year or perhaps 2 years ago, Burrascano said that anyone who has had lyme for at least 1 year has a 100% chance of having coinfections. In other words, you HAVE coinfections once you are sick with lyme for at least a year.
So, what your doctor is doing is very reasonable.
So, perhaps you would have more confidence if you educated yourself more about babs symptoms and also if you got others opinions about your current doctor.
Lyme itself causes terrible anxiety, so whatever you can do to help yourself have peace, it is well worth doing.
If you want to write to me privately with your doctor's name, I will tell you if I know anything about him.
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