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» LymeNet Flash » Questions and Discussion » Medical Questions » LLMD wants to stop babesia treatment after 1 month

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Author Topic: LLMD wants to stop babesia treatment after 1 month
Jon
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If I never came across this glorious website i would have probably never thought twice of my LLMD's recommendations of stoping my MEPRON+Zinthromax combo after 6 weeks.

I asked him today if he used this treatment protocol for babs with his other patients and he said yes. An average of 6 weeks of babs medication.
He is a very reputable LLMD in British Columbia and treats patients from all over Canada.

I dont know what to think... My babs symptoms are next to none. However I still sometimes get the hot flashes, and fever like episodes.
I also had a very low titer of babs.

He wants me to get off babs meds and to start biaxill(sp?) and flagyll very soon.

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SForsgren
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I did Mepron and Biaxin for about 3+ months and I don't think the problem is resolved. 6 weeks seems light.

--------------------
Be well,
Scott

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Tincup
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Hey hey Jon...

Quick notes..

1. The low readings on the Babesia tests do not indicate a "lesser" infection. Often chronic Babesiosis patients have low readings.. or they are negative. Many strains of Babs exist.. and we don't have tests to detect babs in humans for the other strains.

2. Dr. B's 2002 guideline recommendations are a bit different than what your doctor is prescribing. I will post them below for you.

3. Many folks have relapsed when treated short term for babesiosis. In chronic babesiosis (meaning long term having it) .. I've heard 9 months are often needed to kick the babs. Relapses seem.. from what I've seen.. to be harder to treat.

4. If you ask me.. and if I could do it over again.. I would have stayed on the babs treatment more than my original 2 months or so .. but the doc said no, it's gone gone gone. He was wrong wrong wrong. We now know better.

Maybe show your doctor the guidelines and ask about it?

Good luck!


"The duration of treatment with atovaquone plus azithromycin 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 several
months of therapy. Relapsed have occurred, and retreatment is occasionally needed.

[Big Grin]


"The clinical spectrum of human Babesiosis ranges from an apparently silent infection to
a fulminant malaria-like disease."
"When left untreated, silent Babesial infection may persist for months to years."
"Silent infections, which occur in about a third of infected people, may recrudesce."
"Babesial infection may recrudesce after many months of asymptomatic parasitemia."
"Although parasites were initially detected microscopically in the blood of two of the
untreated subjects, and all of the treated subjects, none could be found a week after the
onset of illness."
"Persistent symptoms of Babesiosis accompanied persistent blood-borne Babesial DNA"
"The persistence of seroreactivity increasingly correlated with the persistence of Babesial
DNA."
"In those with only subtle symptoms, Babesiosis often remains undiagnosed."
"Furthermore, physicians tend not to recognize Babesial infection in those who are
co-infected with the agent of Lyme Disease, because Babesial symptoms tend to be
ascribed to Lyme Disease."
"Physicians caring for patients with moderate to severe Lyme disease should consider
obtaining diagnostic tests for Babesiosis and possibly other tick-borne pathogens,
especially in patients experiencing "atypical Lyme disease" or patients in whom the
response to antibiotic treatment is delayed or absent."

Krause, PJ, Telford, SR, Spielman, A, et.al. Concurrent Lyme disease and Babesiosis.
JAMA 1996. 275(21):1657

"Subjects with evidence of both infections reported a greater array of symptoms than
those infected by the spirochete or piroplasm alone."
"Co-infection generally results in more intense acute illness and a more prolonged
convalescence than accompany either infection alone."
"Spirochete DNA was evident more often and remained in the circulation longer in
co-infected subjects than in those experiencing either infection alone."
"Co-infection might also synergize spirochete-induced lesions in human joints, heart and
nerves."
"Babesial infections may impair human host defense mechanisms."
"The possibility of concomitant Babesial infection should be considered when moderate
to severe Lyme Disease has been diagnosed."

SYMPTOMS
In milder forms, symptoms may include a vague sense of imbalance without true vertigo,
headache, mild encephalopathy, fatigue, sweats, air hunger and
occasionally cough. When present as a co-infection with Lyme, initial symptoms of the
illness are often more acute and severe. Suggestions of co-infection include the above
symptoms, but the headaches are more severe, and encephalopathy is out of proportion to
the other Borrelia symptoms. The fulminant presentations include high fevers, shaking
chills and hemolysis, and can be fatal.

DIAGNOSTIC TESTS
Diagnostic tests are insensitive and problematic. There are at least thirteen Babesial
forms found in ticks, yet we can currently only test for B. microti and WA-1 with our
serologic and nuclear tests. Standard blood smears reportedly are reliable for only the
first two weeks of infection, thus are not useful for diagnosing later infections and milder
ones including carrier states where the germ load is too low to be detected.

Krause, PJ, Telford, SR, Spielman, A, et.al. Concurrent Lyme disease and Babesiosis.
JAMA 1996. 275(21):1660
"As is common in the case of Babesial infections, parasites frequently cannot be seen in
blood films."

Therefore, multiple diagnostic test methods are available and each have their own
benefits and limitations. Always consider co-infection in your current Lyme patients who
are not responding fully to Lyme treatment, and be prepared to treat based on clinical
presentation, even with negative tests.

SEROLOGY
Unlike Lyme, Babesia titers can reflect infection status. Thus, persistently positive titers
or western blots suggest persistent infection.

PCR
This is more sensitive than smears for B. microti, but will not detect other species.

ENHANCED SMEAR
This utilizes buffy coat, prolonged scanning (up to three hours per sample!) and digital
photography through custom-made microscopes. Although more sensitive than standard
smears, infections can still be missed. The big
advantage is that it will display multiple species, not just B. microti.

FLUORESCENT IN-SITU HYBRIDIZATION ASSAY (FISH)
This technique is also a form of blood smear. It is said to be 100-fold more sensitive than
standard smears for B. microti, because instead of utilizing standard, ink-based stains, it
uses a fluorescent-linked RNA probe and
ultraviolet light. The Babesial organisms are then much easier to spot when the slides are
scanned. The disadvantage is that currently only B. microti is detected.


TREATMENT
Treating Babesia infections had always been difficult, because the therapy that had been
recommended until 1998 consisted of a combination of clindamycin plus quinine.
Published reports and clinical experience have shown this regimen to be unacceptable, as
nearly half of patients so treated have had to abandon treatment due to serious side
effects, many of which were disabling. Furthermore, even in patients who could tolerate
these drugs, there was a failure rate approaching 50%.

Krause, PJ. Spielman, A, Telford, SR et.al.. Persistent parasitemia after acute Babesiosis
N Engl J Med 1998. 339:162

"Of the treated subjects, almost half had symptoms that were consistent with reactions to
quinine, including hearing loss, tinnitus, hypotension, and such gastrointestinal symptoms
as anorexia, vomiting, and diarrhea"
"Although treatment with clindamycin and quinine reduces the duration of parasitemia,
infection may persist and recrudesce and side effects are common."


Because of these dismal statistics, the current regimen of choice for Babesiosis is the
combination of atovaquone plus azithromycin. Combination was initially studied in
animals, and then applied to Humans with good success, because when atovaquone was
used alone, resistance developed in 20%
of cases, but reportedly did not occur when azithromycin was added. Fewer than 5% of
patients have to halt treatment due to side effects, and the success rate is clearly better
than that of clindamycin plus quinine.

The duration of treatment with atovaquone plus azithromycin 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 several
months of therapy. Relapsed 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. Regular blood counts, liver panels and amylase
levels are recommended during any prolonged course of therapy. Patients who are not
cured with this regimen can be retreated but with higher doses, as this has proven
effective in many of my patients. Artemesia (a non-prescription herb) may be added, but
is not effective when used alone. Metronidazole can also be added to increase
efficacy, but there is minimal clinical data on how much more effective this regimen is.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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breathwork
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I agree that six weeks is a very short treatment time....BUT...in Europe Flagyl and Biaxin are also used to treat babesia.

When Mepron failed, Flagyl and Biaxin helped me. Titres lowered significantly and eventually disappeared after adding artemisin for three months.

Babesia and Malaria are kissing cousins and have a reputation for reappearing after inadequate treatment. Just a few weeks of treatment without any follow up would not be appropriate.

Fortunately for you, your doc is putting you on a med combination that is also helpful for babesia. He may be aware of this or not. I would ask him if so.

Titres need to be negative for a while before ending all treatment, at least that's what my MD does.

Carol Ann

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Jon
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Thanks for the replies.

Tincup: Just want to reply to your statement about the low titer not reflecting a lesser infection. I found this on the articles in your post:

"SEROLOGY
Unlike Lyme, Babesia titers can reflect infection status. Thus, persistently positive titers or western blots suggest persistent infection."

Breathwork:
So they use biaxin and flagyl as the main treatment for babs?
What did that protocol do for you? Are you symptom free?

See the problem with me is that i have NO clue what my babesia symptoms are. I have never in my life gotten night sweats. The only symptom i can relate to babs is the hot flashes i sometimes get. And also the very very mild vertigo dizzy sensation. Perhaps i currently have the silent form of babs? [dizzy]

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shazdancer
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Just to confuse the issue...

I was treated with Mepron/Zith for 6 weeks, by a very prominent LLMD. Herxed on day 4, strong herx on week 4. Two days AFTER the 6 weeks were done, had a HUGE brightening, then continued to get better over the next 2 months. Have stayed well for a year now, despite a very hectic schedule, a kid with Lyme, moving out from ex-bf, and a car accident (she hit mine, it wasn't my fault, lol!).

The variables:

-- I have always had a pretty strong immune system

-- I had already been treated for several months with tetra

-- I asked for enough treatment to achieve remission as I needed to get back to work; I doubt "cure" is in the cards

-- Limited funds

This may not be the safest way to do this, and i am not recommending anything, only saying that it worked for me.

Take care,
Shaz

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mlkeen
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Our llmd had my SO take two weeks off between bottles of mepron, so his body could recover. I think he did 5 or 6 bottles.
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badtick33
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I think I asked before but it fell off the page and I don't know how to look at past "active TOPICS" pages. So...


Does anyone know if biaxcin and plaquenil will touch babesia or any othe co-infects???

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shazdancer
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mlkeen, that was my understanding of what my doc was going to do with me -- go 6 weeks, wait a few days, then decide what to do next. As it was,I got so much better that I decided to stay with that.

Regards,
Shaz

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breathwork
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I've been bitten several times over the years with EMs each time...also positive with high titres for babesia WA1 each time.

Babs is the toughest part of this process for me. Mepron and Zith helped.....lowered titres, but not enough after six months. So then we did Flagyl and Biaxin for six months. Titres still lower but not gone or extremely low. Then the lariam treatment...which is not any fun, and requires patience from your supporting family...a bottle of lorazepam and nice, sweet movies to watch while you're feeling squirrely.

The lariam protocol worked for me that time.

Two years later, bitten again, WA1 titres sky high. We started with the lariam...I didn't really want to, but I also wanted to get rid of this quickly, so did it.

Lariam didn't do it this time...then to Mepron and Zith, titres cut in half....and hold there....then Biaxin and Flagyl....Titres drop by half again...and I added artemisinin in pulsing doses (don't recalle the exact doses, but the principle is to take a higher dose for a few days, then none for a couple of weeks I think?)....This did the trick.

My babesia symptoms are what I refer to as the miseries....sweats at night, headaches, achey neck and upper back, palpitations, shortness of breath...all sort of taking turn in appearance. When these are gone, the lyme seems like a doable disease...

I hope that this is helpful in some way.

Dr. S said that he has found that in difficult to treat babesia cases, what seems to be important is to rotate the therapy regimens until one finally knocks it out. My case shows that it won't be the same protocol each time that wins the war. It's the rotation of therapies that does the trick in the tougher cases.

Carol Ann

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Jon
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Interesting.. Could you try and remember the doses you were taking of artemisinin?? [cussing] [lol]
I just popped 300 mg of the stuff

How do you know you were bitten again and that it was not a relapse?

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breathwork
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I knew it was a new bite because I saw the tick, then got an EM, then tested positive strongly for babesia after being clear for a long while. Also my WB bands for lyme were significantly different for lyme. Dr. S said that it was almost certainly a new infection rather than relapse.

I also got my new puppy tested who was on the walk with me when I was bitten...It was her first long walk and she played with a neighbor's dog for about 20 minutes. She tested positive two weeks later.

I remeber taking six capsules twice a day...but many consider that to be a very high dose.

Do a search on artemisinin and you'll find the doses that are recommended for this kind of use...Sorry..

Carol Ann

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david1097
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You have answered your own question in that the symptoms you decribe can be (and likely are) from lyme its self. I know this for sure since i have babesia and have relapsed with babesia as clearly shown by the quick releif brought about by the restart of mepron/artiminisin. The symtopms you mention still remain after restat of the babesia medication.

At present for me, while the babesia is under control, the fever and intense sweating episodes still occur, usually in syncronization with the lyme flareup cycle so these along cannot be considered as indicators of active babesia infection.

With multiple infections, the symtoms get very difficult to distinguish and the interaction between the diseases is complex so figuring out what is happening and how to treat it is hard. If you stop the mepron after 6 weeks a relapse of babesia will be apparent and a prompt restart should clear it up. If this happens the question is how long to continue.

It appears that your Dr is using an approach that he has found sucessful and is cost consious. Mepron is very expensive and the long term effect is no where near known. Mepron was pressed into production to address an aids related pulmanary infection and I suspect that the long term effect was not high on the list of critical things to know during the approval process. So despite the apparent safety there are some question as to what the risk acually is. This I am sure also factors into your Dr's decision.

Bottom line, watch for a relapse and seek prompt attention should it happen. A clear relapse with any of these co-infection is not subject to "i think I feel this" , when you relapse you WILL know as the symtomolgy is acutely much worse, mainly due to the fast multplication time of the organisms. (I relapsed with babesia within 1.5 weeks after stopping mepron and within 3 days with barotonella). This is compared to treatment during convolesence in which the symptoms are still present (and morbidity may be high) but they are not obviously worse (except during flare ups) and diminish over time with correct treatment.

In terms of testing, antibodies for various infections can stay around for a long long time even after successfull treatment so they are of limited use in determining extent of cure.

Hope that helps.

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liz28
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While you are the only person who can decide which treatment you wish to pursue, please be aware that almost every babesia drug is available short-term through various travel clinics and travel doctors in Canada. They are all malaria drugs.
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