I haven't heard of this anywhere else, and can't figure out where he got the idea. Because some of these people haven't been adequately treated for Lyme yet, I'm worried about the low dose.

Has anybody heard of this, or seen any documentation on it? I hate to question the doctor, if he's right. On the other hand....

------------------
Sonoma County Lyme Support
[email protected]

Can Babesia, like malaria, can lie hidden in the liver to emerge later and infect red blood cells

If you google malaria treatments you'll find that 2 drugs are nearly always used and in some protocols doxy is one of the two drugs, quinine sulfate being the other.

I see that this low dose of doxycycline is used as a prophylactic treatment for malaria. Interesting. I wonder if this doc came up with the idea on his own, or if he heard about it somewhere.

The other person you heard this from on Lymenet is also a patient of the same doctor. She is one of the people who told me about it.

Well, it doesn't relieve my concerns about Lyme, but I can see at least where the concept came from.

If doxy were needed for babs Tx to get the cysts, then why have there been so many successes without it? Wouldn't babs always survive and come back if doxy had not been part of the Tx? Does anyone know how long doxy is needed in this regime?

Micul, people do relapse after treatment with Mepron and Zith. Babesia is not proving to be particularly easy to treat, with people taking the meds for very long periods, and still showing symptoms or positive tests.

Malaria does have a liver stage, so it makes sense that babesia might. I just don't know much about it.

There are a few reasons why there are so many failures. Not enough fat in meal, patient not absorbing fat, pause in Tx after 3 wks, too short of a Tx period (sometimes only one or 2 months), too low of a dose of zith, continued use of milk thistle with mep, continued use of Q 10 ,stopping and starting mep due to herxes, continued use of antioxidants and milk thistle with artemisinin , too low of a dose of art , stopping and starting art. I'm sure that there are other reasons for Tx failures that I haven't listed. I would like to see some hard evidence that doxy is needed if it exhists. Was there some new study for it?

The big question is, why aren't, and why haven't most LLMD's been using doxy for cyst stage if this is true? Surely this would have been common knowledge.

Info from articles for milk thistle and fat absorption:

Milk thistle also has the potential to lower levels of the following drugs in the blood:

anti-parasite drugs - Mepron (atovaquone)
sedatives/sleeping pills - Ativan (lorazepam)
hormones - estrogen
The research by the scientists in Pittsburgh and at the NIH should emphasize to readers that simply because a product is "natural" it does not mean it is safe when taken with other substances. This research also highlights the need to conduct further research on herb-drug interactions on liver cells as well as in people. Such studies may find combinations of herbs and drugs that can be safely used together.

The problem with absorption is threefold. First - Mepron needs to bind to fat to get absorbed at all, which means you need to make sure you have enough fat in your diet. Burroughs Wellcome originally suggested taking the drug with a high fat diet, which they define as at least 23 grams of fat per meal (2- 3 tablespoons plus of butter). Recently, the Burroughs Wellcome team changed their tune to say that an "average" diet probably provides enough fat for absorbing Mepron, apparently worried that the "high fat diet" requirement was scaring people away. The weighty PR questions aside, if you are taking Mepron, head for the Haagen Daz (or the more politically correct Ben and Jerry's) and don't hesitate to load up on butter. It could save your life.

But - second problem: there is no guarantee that a high fat diet will do the trick. For unknown reasons, some people still don't seem to absorb adequate levels of the drug. Who are these people and how do you know whether you're one of them? Right now, it's hard to say. Burroughs Wellcome has no answers, but has noted that patients with severe diarrhea don't do so well. Can you tell once you're taking Mepron if you're absorbing it well? No. Burroughs Wellcome has offered no tests for you or your doc by which to monitor your blood levels of Mepron once you're taking the drug. Asked if there were even any indirect tests, like elevated enzymes of some sort, that would indicate absorption - Burroughs Wellcome says no. If you take Mepron, monitor your symptoms closely. If you're using it for prophylaxis - don't ignore any dry coughs.

Problem #3 - Mepron gets absorbed over time. Some of the drug is absorbed shortly after you take it, but the bulk of the dose gets released by your liver later. This second release can happen any time from one to four days after you take the first pill. The result is that it can take six or seven days to get effective (PCP fighting) levels of the drug in your blood (if you have enough fat in your diet and you absorb fat well). During this time, your PCP may be progressing from "mild or moderate" to quite severe.

Mepron looks like a good oral drug, well tolerated (not nearly as toxic as iv pentamidine, for example) and very effective in most people. If you can absorb it, it's great to have an alternative, especially if you're allergic to Bactrim. What's scary is that taking it might do nothing for your PCP for several days, and possibly nothing for your PCP at all. So what can you do?

When taking Mepron:

keep close track of your symptoms
make sure your doctor is similarly attentive
maximize your fat intake at every meal, with butter, ice cream, fish oil, supplements, the works (see below),
get your fat absorption checked to see if the fat you're eating is getting in your body,
consider taking another anti- PCP drug for the first week (see the Bactrim and Mepron study mentioned below)
work on get de-sensitized to Bactrim/Septra (see following box).
Upping the ante
I suspect (and I'm pretty sure Burroughs Wellcome does too) that one Mepron problem is fat absorption. Many PWAs have problems absorbing fat. One symptom of poor fat absorption is severe diarrhea and since you need to absorb fat to absorb the drug...well, you do the math. If you can absorb Mepron, increasing your body's ability to absorb fat will help you absorb Mepron. On the other hand, if you have severe intestinal problems and can't absorb well, no amount of fat in your diet will help you absorb Mepron.

How do you know if you have trouble absorbing fat? If you're allergic to Bactrim/Septra, it would be useful to know. (It'd be good to know anyway, as lousy fat absorption is an awfully common cause of weight loss, and now there's weight gain products designed for people who can't absorb fat well.) Fat gets absorbed in your small intestine, and it's not easy to know unless you have some clear symptoms, like diarrhea. However, there are several studies documenting poor fat absorption in PWAs without either diarrhea and weight loss.

Unfortunately, there doesn't seem to be any readily available, accurate method for checking fat absorption. The most common way is to measure how much fat you are excreting, to put it as delicately as possible, by eating a regular fat content meal, and having your stool stained in a lab to measure the fat that slipped on through your system. This fecal stain test is quite imprecise. Other possible tests, including lipid levels, albumin to globulin ratios, total proteins, etc., need to be looked at within a broader context of how your small intestine, your liver, etc. are working, but can be indirect indicators of fat malabsorption.

If you can't absorb fat well, one thing to consider is taking Mepron with nutritional supplements made with easy- to- absorb fats, such as Liposorb or Isosource, or the simple fats themselves (the real thing) as in the Mead Johnson product, MCT Oil. These are available at drug stores without a prescription (see NOTES, #22). MCT Oil is sold in quart form only by Mead Johnson, and cheap it's not, running $70- 80/quart. Probably a script is a good idea. You may also absorb fat better if your diet includes essential fatty acids such as those found in flaxseed oil and fish oil, which you can find in health food stores. I asked Dr. Rogers, one of the Burroughs Wellcome docs, about taking Liposorb, and he thought it might help Mepron absorption, and mentioned that they were thinking of running a small study to see if that was true. Think on, Burroughs Wellcome, time's a- wasting.

One idea for coping with how long it may take to absorb sufficient levels of Mepron comes from an interesting little Burroughs Wellcome study mentioned at their community meetings lat fall. For a week or two they gave patients Mepron and Bactrim at the same time. The patients were all allergic to Bactrim, but since it usually takes a week or two for the rash to appear, most patients achieved effective levels of Mepron by the time their rash appeared (at which point they could safely stop taking Bactrim). The company hasn't evaluated other drugs with Mepron, and has no plans to do so in the near future.

The New Atovaquone
Last fall, Burroughs Wellcome's PR machine heard activist rumblings about Mepron breakthroughs and quickly scheduled a series of meetings. The centerpiece of these meetings was a new liquid formulation of the drug which they claim will be absorbed 2 to 3 times more than the current tablets. Well, great, but this formulation won't be available until the end of 1994 at the earliest. We asked Burroughs Wellcome to analyze blood work from the clinical trials in the meantime to see whether any of the indirect measurements used to check fat absorption were correlated with poor Mepron absorption, in hopes of finding some absorption markers for the current formulation. They've agreed to do this, but told us that it would take a few weeks.

Is the liquid formulation released faster in the body once it's absorbed? Recently released pharmacokinetics data from a study of 80 HIV positive patients shows that most patients taking the new liquid formulation get therapeutic levels in their blood by the 2nd day, using a dose of 750 mg 3 x/day with food, (the highest trial dose), and by the 4th day at the latest. Consistent (steady state) levels of Mepron are not achieved until 7 to 10 days after starting therapy.

This liquid formulation is being tested in several trial sites around the country for people with acute PCP who are not allergic to Bactrim/Septra. If you are in this trial, keep track of your symptoms and remember that you have the option to withdraw from the study at any time and get regular PCP therapy with no retribution.

What about prophylaxis? The pill form has never been studied for prophylaxis, and the liquid formulation is in trials now. So we don't know. It may, if you're absorbing it well. And if you're allergic to everything else, it's genuinely encouraging to have an alternative. Just don't ignore any dry coughs. The NIH is running the prophylaxis trial down in Rockville, and they'll fly you down there if you qualify (you have to pay for the first trip).

Ironically, Burroughs Wellcome has placed a price cap on Mepron that you would only reach if you were using this drug over a long period of time, say as a prophylaxis. Gee, does this sound like Burroughs Wellcome might be trying to promote this usage on the sly? M- m- m- maybe. In the meantime, remember Bactrim/Septra just got registered for PCP prophylaxis (believe it or not, it's been off- label all this time) and there's always dapsone or aerosolized pentamidine to reduce the chances of coming down with PCP.

Other options for acute PCP, either for combination with Mepron or alone, include dapsone, which many patients allergic to Bactrim/Septra can still take; a clindamycin/primaquine combination, which is more toxic and less effective; IV pentamidine; or IV trimetrexate, which is available via Treatment IND to anyone who have failed or are intolerant to Bactrim/Septra. Your doctor can enroll you by calling (800) 537- 9978.

In sum, lots of doctors like Mepron - it's safer than pentamidine and works well in most PWAs who take it. And good clinical practice almost always involves balancing an awful amount of ambiguity about the best course of action because of the limitations of drugs, and the complexity of HIV- related absorption problems. All the doctors we interviewed for this piece use Mepron carefully, sometimes using pentamidine and/or Bactrim re- sensitization and/or other therapies. In some ways, the Mepron story seems like a horrific tease: two years ago, we didn't have such a promising alternative for PWAs with Bactrim allergies and now we have one but we can't measure when it's working well or not.

Since PCP is still the number one life threatening infection for PWAs, it's heartening that Mepron's absorption problems are being worked on. This is unusual in the history of AIDS drug development. Although drug absorption problems are common (look at the AZT trials), they remain hidden and by in large un- researched in the context of drug development. Clinical trial participants are handpicked, especially in early pharmacokinetics trials, so once again the American drug development process fails those who need it most, the bulk of the people who will buy and use the drugs. It's estimated that 50- 70% of PWAs suffer from chronic diarrhea, the most common symptom of malabsorption and one of the most common reasons for getting excluded from an early trial. The FDA fails to push companies about the limitations of their absorption studies, but that doesn't mean we can't. In the meantime, some thing else that hasn't changed is that you're the real expert here, you know best how your body is responding. Grace under fire is fighting for your own survival.

As Janet said, there is lots of info on the use of doxy for Malaria, so this doc may be using it based on speculation. He does treat long term with the Mepron Zith combo, though with lower doses of Zith than I see on Lymenet, but within Dr. B's recommendations. The doxy is added on at the end of the long treatment course.

Your info is very interesting, and I will pass it on to the support group, but would love to have the citations, if you have them.

My question wasn't whether doxy works against malaria. My question is if it is needed for the cysts? People do get well from mepron/zith , malorone , artemisinin , and clnyd/Quinine protocols. If doxy was needed for cysts , then all these other therapy's would always fail. It would only make sense that these other meds must kill the cyst stage also

Both you and the article (burrough's wellcome)talk about absorption rates from a TABLET FORM?

The tablet form is no longer used. Mepron is Atovaquone suspension liquid. It IS much more absorbable by the body.

When was the article published?

You say "recently."

The article also mentions the liquid suspension. It is suppose to be more absorpable, but even the latest info and studies were done with a high fat meal. If absorpability were not still a problem with the liquid, then why do they continue to test with a hight fat meal?

It looks to me like fat is still a significant factor in how well the drug will work. I did not say that it was a recent article.

For me .. 8 months of Mepron and Zith (21 day courses with the recommended break in between) and eating with the fat recommendations described..
reduced my Babesia symptoms notably as time went on, but did not cure it.

After stopping, it returned with a much more insidious palate of symptoms..including a chronic afternoon low grade fever.
It seemed, in my case, that the use of Mepron Zith, clynda/quinine, and other anti-malarial drugs only served to form a more resistant case.

If you study veterinary medicine and articles on human Malaria..
it seems clear there is a liver, or even a bone marrow stage of Babs that allows it to reproduce from sequestered areas...plus of course it lives and reprodices in the blood as protazoa inside RBC's.

The combination of Artemther and Doxy was used by Bpeck with success, and she used the Doxy to 'treat the liver stage'..

Then...there's the action of artimisinin or artemether as getting inside the RBC's and literally blasting the protazoa from inside.

I stopped responding to further anti-malarial (prescribed) drugs..
and then got big response, and so far as I can tell one year later..cure..
from using three courses of Riamet (which is artemether plus Lumafantrine for the liver stage of Malaria)..
and followed this by pulsing artimisinin (Holley Pharmaceuticals)..
300mg (100mg 3x per day)..pulsing this in five day courses, with three days off.

The reason I decided to pulse was 2-fold..
one because I wanted to keep catching the Babs as it reprodiced from sequestered areas..and two: because reading the literature from Holley..where they have studied it's action in Cancer and Malaria..
it is noted that the blood concentration levels of Artemisinin drops precipitously
after 3-4 days. So..if you take a three day break..it is noted to again achieve full concentration when taken again.

I did this for many months...and the chronic fever turned to constant fever, and then went away.

Interestingly..you are instructed to take Riamet with fat, too. And..also in the Holley Pharmaceutical literature (you can request all of their studies on Artimisinin in Cancer and Malaria, they have none in Babs)..they also have documented effective manipulation using iron.
You want no or low iron in blood if you want the Art to get into RBC's, as RBC's have iron, and then the Art will go there instead of food or supplement iron particles in the blood. But - in cancer, they load the tissues with iron food and supplements, so it may be attracted to the tissue infection (also with much different dosing concentrations than Maleria)
So..I came up with a Babs regimine of my own by taking that info into account.
I stayed low iron when taking the Artemether and Artemesinin.
(so did Bpeck, as you can see in her posts of January 2003? or 2002)

The way this applies to Doxy and Babs to my mind is ..Doxy may be helpful for the liver stage..
and if it does address 'cyst forms' in the blood, that could be helpful..
because that is where Babs lives.
You gotta blast these parasites out of the RBC.

There is some speculation that Artemesia therefore can also address Lyme cysts, but this as far as I know is not documented.

I was not on Doxy during any of this, but did have the Lumafantrine in the Riamet, and I was on Minocycline.

The WHO has come out and published that in the case of Malaria, all these pharmaceuticals have created a more resistant Malaria strain, and they have returned to reccomending Artemesia to treat Maleria, for which it is very effective, way more effective.. and causes NO resistance.

Course..pharmaceuticals wanted something they could manufacture in the lab ..whereas Artemesia is an easily grown and cultivated herb, it's most powerful form being extracted directly from the plant with no lab manipulation. Now, last I read anyway..Artemesia is in shortage..when in fact..it could have been easily grown over these years to provide enough medicine for all the countries where Maleria is endemic.
Yeesh.

Mo

Now you guys have me wondering....

I was experiencing pretty bad liver PAIN, URQ (upper right quad) pain immiately after starting Mepron/zith.

Is there any connection between this and the liver "form" of babs?

Same for hubby, but for 10 mo, some diarrhea during the last 2 months of taking Mepron. Babs relapse 2 mo after stopping mepron. Restarted on mepron/ketek, with immediate and major improvments in sx.

Our LLMD is using tindamax to help address the problem of persistant babs, along with the mepron/ketek, and will be moving to a similar, but newer generation drug whose name I cannot recall at the moment.

He did not discuss babs "cysts". I have heard several references to babs lying dormant in the liver, but I have not found anything specifically about this in the papers I have read. I don't know what it means -- that the babesia is infecting cells other than RBCs? That it can cover itself with fibrin and live outside of the RBCs? That it can lie dormant in some changed form within the RBCs?

Or is the assumption that babs invades the liver cells and does the hypnozoite thingie just like malaria?

Can anyone 'splain me?

but that it sequesters in the liver (and perhaps other places) and is quite active, in that it replicates there..avoiding certain treatments that concentrate in blood..
and off it goes again into the blood stream.

My understanding was that Doxy can treat the liver..but you would need an effective agent getting it in the blood.

If I had to take a leaping guess, for myself..I would think Artemether and Doxy, or Artemisinin and Doxy..
but mayne zith and mepron and artemisinin, long term..would have similar effect?
Don't know.

above is just from what I can gather in reading so far, and by observing my own relapses after Mepron/Zith..
and also after some of the earlier courses of artemether..the way symptoms were about gone and then krept back..
plus the documentation on Malaria, and Babs in veterinary medical literature.

Besides..how does it end up inside RBC's in the first place?

Is it documented to 'break into' the cells as freely as Lyme does? Or..must it be doing most of it's replication in the liver?

Then, there is also cerebral Malaria, so why not cerebral Babs? It's hard getting things in or out of the brain tissues.

It'd be nice if there was more research, tho -- wouldn't it?

What's the hypnozoite thingy?

Does the little parasite lay down on a tiny leather sofa ? (OK -- I know -- that was a groaner at best.)

Trailsgrl..I would bet yes, that one could have liver inflammation if some of the infection was reached there. Do you still have the pain? and have you had your liver enzymes checked?

Oh..another aside thought --
I recently found out that IgE (Immunoglobulins, commonly tested in Lyme are the IgG and IgM Immunoglobulin serum
--not Western Blot -- this is for general immune response measure --)

The IgE is typically high in parasites and allergy!!
Maybe we should be testing the IgE for Babs.. (or other parasitic infections)

Mo

They were mildly (2x) elevated then.

URQ pain was gone for almost two days and now returns. I am not taking mepron/zith right at this moment. have been off for 12 days.

I do have a TINY amount of sludge, possibly left over from 2001 treatment with IV rocephin. But my blood work did not show any blockage elevation. No increase of bilirubin, creatinine, BUN or AL Phos. So that just points to LIVER stuff, not gallbladder stuff.

Sounds like you have been through a lot! Thanks for helping with my education!
Trails

Tough call for sure on the LFT raise (was it alt or ast, or both?)
My very best guess is that could
possibly be from the meds killing Babesia and sending "trash" through the liver -
will be interesting to see the results after you went off, and if you go back on any Babs treatment.

Mino - I went about this totally on my own advise, but I read everything I could on maleria, BPecks files and posts, and all available literature from Novartis, and PubMed literature on the ingredients in Riamet..
and safety.

The fact they use it on small children in Africa and India made me feel somewhat OK, but I still read all info on whether it would be dangerous to take it three times..
with all I read I decided it was the thing to do..
besides, the Babs was awful and remaining with a treatment resistant case of Babesia was much more scary to me.
I still would suggest anyone read everything they can and make their own decision.

I did three courses, about thre weeks apart, consecutively.

I judged that because I had a chronic fever to go by..
after the first course, if no symptoms returned I would not have taken the second..
but had it on hand.

The fever, on the three day course of Riamet..shot up to 102 the first day, and stayed there for 24 hrs..then slowly decreased over the next three days to NORMAL all day, for the first time in over a year.

Two weeks later, that afternoon fever was back (the nagging, chronic, unproductive afternoon 'Babs' fever, always between 3 and 8 pm, the rest of the time was normal or sub, this was a long time symptom of mine along with neck pain and dark urine)..so at three weeks I went again.

Same thing happened, tho - fever spike wasn't as high..again went to normal ..
and again returned about thre weeks later, and I took the third course and the same thing happened, with even lower fever reaction..
then to normal for a few weeks..and back again..
and it was then I started the 5 day on three day off pulsing of 100mg 3x a day of Holley Pharmaceutical Artimisinin.

Thanks for the articles, I'll see if I can find any of I have that may be of interest here..
I have to retrieve my files from back up disk, tho, so may take a little while.

I guess Babesia may be like Maleria in it's ability to hide in the liever and replicate in the RBC's there (or maybe in other places, too)..but I think it's way more insideous and 'silent', symptoms aren't raging and as obvious. Actually, there are new strains of Maleria that do act more this way..ones emerging after the overuse af anti-M's in endemic regions.

Mo

I'm glad you were both finally successful in getting rid of the babs. Yhe literature is confusing on the best way to take ART, because some of it says not to take a break, and some of it says to stop after 4 days. Gigi says that Dr K says to take it for 3 weeks, then stop for 1 week.

Mino was successful with continued Tx, as have been other people as long as other meds were taken in combo.

Mo, you give credit to the riamet for beating babs, yet you had to pulse Art for many months after 3 courses of it before you felt that it was gone. If the riamet did in fact get rid of it, why would you have to take Art for so many months?

Can a LLMD write a script for lumefantrine, and what is lumefantrine? Holley Phar has artemether although dose is different than Riamet-I seem to remember much higher.

Here's a link to info about Riamet that states it treats malaria in the blood-but doesn't mention if Riamet also can reach malaria where it sequesters, be that the liver or bone marrow. It's in the 5th paragraph.
http://www.netdoctor.co.uk/medicines/100004714.html

I don't attribute eradicating babs to Riamet, in my case..
it didn't get rid of it as far as I could tell tracking symptoms..
which is precisely why I followed up with Art pulsing.

I do, however, have a case history of some propensity to aquiring a drug resistant strain..
or, there's something about Babs that is more elusive than Malaria.

Then again, many have Malaria in their blood for life...many treat it with Riamet fully..
what's the difference? Creating drug resistance in your strain? Don't know.

I did say, tho -- that Riamet was the first of all treatments to bring such a dramatic response, as noted above in my post.
Very dramatic initial and post response.

Would it have gotten rid of it totally if I was 'virgin'..or less treated?..don't know.

Others have treated long standing cases with it or similar drugs (Artemether and Doxy)..but the ones I know of did not have the long term prior pharmaceuticals I had had. Then again, maybe it can't treat Babs..I can only relay my experience and thoughts on it.

I am also a case that did not fet rid of Babs with the long term, recommended tx with proper fat intake and drug combinations.

Riamet is not available in the US, you have to find it through foreign connections or pharmacies.

Not an easy task, but doable. Takes some ingenuity. It is readily available in most other countries, and given to travelors in endemic areas to have on hand should they come down with Maleria.

Mo

I did a ton of research on Babesia in the Thia literature, and Vet Med. before deciding on Babesia therapy.

Here is an excellent site that explains the parasite's life cycle in the body.
http://www.tulane.edu/~wiser/protozoology/notes/api.html#babesia

I do not have a spleen and I worried about Babs killing me before Lyme did.

I tested positive for Babs, & already had a mis dx of heymolytic anemia (destroyed RBCs), evidence of RBC fragments, and a history of elevated temps and fevers.

After I educated myself on the available therapies for Babesia, I settled on the 3rd world 5 day therapy of b-artemether/Doxy for Malaria. b-artemether is a prescription drug, and not a supplement, and there are risks associated with it (5% death rate in some instances of complictaed malaria) that are not associated with the US FDA approved drugs for malaria.

My 2 Drs. were not supportive of this decision (understandably, as they can only prescribe US FDA approved drugs). I did this on my own, although they did monitor my blood periodically while I was on the therapy, then while my body was clearing the parasites.

I expected fever during therapy, but instead experienced something very near hypothermic shock a few times during that 5 days.
And it was necessary to almost fast for those 5 days, as iron interfers with the drug (and iron is in absolutely everything you eat).

It was sucessfull for me.
I think alot of people don't beleive me when I tell them that a 5 day therapy that cost me $35.00 cured it - but it did. No more elevated temps, no fevers, so symptoms, and no periodic anemia. No relapse and it's been 2 years since my therapy.

You'll have to be creative though if you want this therapy. No US Dr. can prescribe it.

Barb
edited for spelling by bpeck

Thanks for your input. Is artemether the same thing as b-artemether? If not, where would someone get it?

I would be interested in knowing what doses of this combo were effective for you.

I am confused about the proper use of artemisinin, and artemether in relation to iron. There is no info specifically for babs. I have looked at some info for malaria Tx, and cancer Tx, but Tx protocols are mixed. As far as cancer Tx goes, some Dr's are saying to take additional iron (to load up the cells with it), and some Dr's are restricting it. Both sides are getting good results.

I know that I am getting plenty of iron with the food that I eat, and the chlorella that I take. I am not sure if it would be better to try and reduce it though while I am on ART/mep/zith/plaq. ART has a short half life, 3 to 4 hrs. So, wouldn't it be a good thing to still have some naturally occuring iron intake to restore lost iron, as long as that intake was 2 to 3 hrs away from the ART? As usual, none of this lyme disease drug protocol stuff seems to have a clear definitive answer.

The question about whether or not doxy is needed for the cyst stage is still unclear also. It looks to me like the ART will probably do the job in long term Tx. Maybe it would be a good idea to throw in some doxy for the last month of Tx just to be safe?

I did see what Tincup posted about the possibilty of tetracycline reducing the absorption of Mepron, so it looks like it might not be so good to take the doxy at the same time as the Mepron, if someone does decide to go that route.

I've also been questioning what to do in the event you have someone like me, who consistently tests negative to babesia, does not have the most obvious symptoms, really isn't getting well on Lyme protocols, and gets WAY worse on treatment for babesia.

For myself, I decided not to tough it out. I did improve with a few symptoms, but how much suffering is a few symptoms worth? I see so many having such a terrible time on the Mepron protocol for months, and I feel at a loss as to what to think here.

It is easier to decide when you have clear tests, a good response to treatment, or the most obvious symptoms, but what to do with more borderline cases?

WHen you say you do not have the obvious symptoms, do you have the not so obvious like damaged RBCells, or RBC frgaments in the blood, with anemia?

Feeling worse on the drugs does not indicate
that you have Babesia.
There are other things that can cause temperature and head aches (and night sweating) so it is possible you do not have Babesia- and have something else.

Were your Lyme tests positive or equivocal?

Barb

I did antibody tests, PCR for both microti and Wa-1, FISH, and if there was any other test to do, we did it. Twice. Absolutely no sign.

I was CDC positive for Lyme, with later tests, after treatment, showing lesss positive, but still there. Positive as well for HME.

Nothing showing up on blood counts, hematocrit, or anything else that has to do with red or any other kind of blood cells. My CBCs were always perfectly normal, until trying to treat for babesia.

The only symptoms my doc was going on was severe headaches, slight fevers without sweats, and rapid heart rate, with other heart symptoms, heart pain, etc.

I did get worse on Mepron, but everything that I developed is considered a side effect of the drug, and I don't think it meant I had babesia. I insisted on stopping the treatment, because I was getting continuously worse.

I agree with you. There are other things that can cause these symptoms. I saw a neurologist for the headaches, who finally gave me a drug that controls them. She told me that undertreated thyroid could be a factor, as well as several other issues I am dealing with.

Much less scary proposition, to me, than taking Mepron for months. Plus, so far the combo has worked to suppress the headaches.

It IS possible that the Mepron did treat something, as my rapid heart rate has gone down. However, I was put on beta blockers for several months, and it is also possible just doing that recalibrated things enough. Or, it could just be the waxing and waning that happens anyway.

I'm concerned seeing so many people going through such extreme treatment protocols on a guess. I know there are many that do indeed need to treat, even without positive tests. I'm just afraid that others may be harmed in the process. How can we tell who is who?

I probably have had Lyme for many years. Tested negative for lyme by IFA spring 2004. Last October 2004 I developed new symptoms that compelled my PCP to take me seriously. For each of 5 consecutive days I awoke with a normal temp. Around 4 pm the chills would start and last 2 hours or so. I put on a down coat, got under a blanket and chattered for 2 hours or so. Then I would get too warm, take off all my clothes and stand outside in the cold (don't worry, no one's eyes were offended), the fever would climb to 101-102, stay elevated until midnite or 1 am then return to normal. Next day, repeat. Also, headaches, nausea, no appetite. I have my spleen.

On the 5th day I saw my PCP. Because of my history of traveling in Amazonia 15 years ago he suspected malaria. He started me on doxy, 100 mg BID(THANK GOD). A malarial smear was done, no parasites seen. A Western Blot was done-CDC positive for Lyme. The fever never returned after I started doxy.

Skip ahead 2 months, been on doxy, upping dose-now at LLMD and Babesia titer is back from MDL-positive (surprise?) LLMD told me 6 weeks of 250 mg BID of zithro and one (yes, I repeat, one) tsp of mepron. I did it and felt horrible the whole time. This is a well known ILADS doc that I no longer see.

OK, 6 weeks tx is done, Babesia gone, or so I thought and I start ketek. After 2 lousy weeks I start to feel decent. But then it slowly slips away. Headaches back, bad bruising from veinapuncture, throwing off covers at night, ... Each month for 3 months, MDL gets a negative Babesia PCR and titer on me.

Repeat the Mepron tx I'm told, I tried for 4 weeks and I HATE MEPRON, It messes with my mind in ways I can't handle. Besides, there are so many patients with tx failures.

OK, I start to study it's well known cousin, Plasmodium. Is the key to use tx for P. vivax and P. ovale-the 2 malarias that relapse? The tx I have in mind is 3 days of malarone followed by 14 days of primaquine, to get the little b*st**ds in the liver. I searched babesia and primaquine. Mixed results, works for feline Babesia not for hamsters. Not one study using malarone followed by primaquine. I had blood drawn yesterday for a G6PD, must be checked prior to using primaquine. I am concerned my Babesia may have resistance to ATQ (atovaquone).

I would greatly appreciate your expert opinion and am curious how you decided on b-artemether and doxy. Yes, I know doxy is used in some combinations for some of the 4 malarias.

Thank you, Janet

There are OTHER things that can cause daily cyclical low grade fevers, sweats, chills, and dizziness while taking Mepron and zith?

That is the key to one of my MAJOR questions for weeks now.

I never experienced ANY of the above symptoms BEFORE starting mepron/zith. Only after.

Could they be side effects? I cant seem to get to any good web pages about side effects. Everything talks about AIDS patients and that they couldnt tell what was what with them.

Been OFF mepron/zith for 2 weeks and I no longer have the cyclical, daily malarial like symptoms.

My pharmacy handout on Mepron clearly states that all those symptoms are possible effects from the medication.

It is in fact very hard to sort out what is what. I had dizziness, headaches, and low grade fevers prior to starting it, but not sweating and chills. Those came along with the Mepron. My doctor told me it was a herx, but I don't believe he was correct.

However, I NEVER had a positive test. AND, I do have other possible causes for my symptoms.

I had the fever/chills cycle (exactly the same every day) before I started any meds. And I don't think a fever of 102 is low grade.

This is so damn confusing. I spend hours reading about malaria and babesia, lots of info about malaria, not much about Babesia. I just can't swallow that it should take months of tx for Babesia (only to relapse) when malaria is treated in days or weeks.

My main problem with Mepron is SEVERE depression, and I will search for and try other Babesia tx. Malaria tx using Malarone is 3 days. However, if the patient has one of the 2 malarias that relapse (P. ovale or P. vivax) then 14 days of primaquine are needed for radical cure (treat the liver stages).

I have learned not to rely solely on the LLMD for solutions.

Janet