I'm not a doctor obviously but you shouldn't be scared. Just take care of and have your liver tested regularly. If you are already having liver problems definitely talk to a doctor first. Same with spleen problems.

Unfortunately I don't think a US doctor is going to have much to say about Riamet. It didn't do anything harmful to me except make me tired for a few days. All my blood work tested normal afterwards. And I had already been on abx for 8 months, and had taken Mepron for about 6 weeks.

Taking either one of these is the only way you are going to get better. If you decide to go the Mepron route, just wait until Monday to start and build up slowly. Make sure you are taking zithromax also (I think some people also take ketek with it, maybe another abx as an alternative.)

But if you don't take the Riamet please sell it to me because I can't get any and really want some! :-)

I am not quite sure what to tell you.
(Sorry )

Also curious...why you haven't got a macrolide right beside that Mepron.

Trout

I personally think that it is better to take meds like they are prescribed. Taking tiny doses of them only gives the bugs more of a chance to develope resistance to them. This is something you should weigh carefully if you plan on taking mep by itself. I'm sure you know also that mep is a long course, at least 6-7 months, and even then it has failures. That's when it's taken with a another abx and Art. I wouldn't have much faith in it myself as a monotherapy. I would go with Riamet, and then pulse artemisinin. Others have used Riamet, but it usually took 3 courses of it to clear babs, and then Mo had to pulse Art for months after that.

No macrolide with mepron because...antibiotics give me the most horrendous yeast flareups...

Oh I wish I never got bit by a tick. I can't handle the disease and I can't handle the treatment. I pray I pray I pray I pray and I pray some more that the product I 'invented' works because its nontoxic as far as I know. Oh please work and deliver me from these drugs. Please get formulated soon and work work work. All lymies please pray this works.

The thought of being on a drug for 10 months, me who never took more than an aspirin, me, Miss Sensitive, is just too much for me.

Where is magic when you need it.

I got to a point about 5 years ago where my therapy at that time was actually making me sicker and sicker and the LLMD I saw at the time kept telling me to push through...and it never got better....

When I switched LLMD's I found I had a VERY active case of babesia.... At that point I could barely walk...

I was given Mepron and Zithro and I "sat" on it for weeks, petrified to take anythig else I was so traumitized... I went back to my LLMD and the advise I was given is " if you do not treat this problem you will end up with a lifetime of problems and will be heading into a wheelchair"

NOT that will happen to you, but it was a wakeup call for me to realize that I needed to treat these coinfetions head on to make progress or I would stay stagnant... and I actually did good on the mepron..

I followed with Bicillan and that was the true beginning of my life becomming less of a nightmare.

I am sharing this with you to encoruage you to try the Mepron... If you have babs ...its important to take care of it...

I will favor the riamet because no abx thus no yeast.

I have to overcome my fear.
It has to be the right timing.
My doc is away right now and maybe I'll wait until she's back. SHe's not an LLMD as I don't tend to see them (until I learned I had babs, I had no reason to see them as I don't tolerate abx well cuz of such bad candida).

SHe is reasonably priced and in the city and open to treatments and has treated AIDS patients so knows about protozoal infections and drugs for them.

Anyway. I am not ready to do it today but I must do it soon.

Whereas some years ago, my previous doc refused, as did the infectious disease doc.

I just have to get my emotions in tow.

i've done neither med.; mepron scares me.
if i have babs., its at an extremely low level.

theoretically, (i'm a "barnes & noble", "paperback" physician),i'd do the following:

1. i'd do the riamet, without antioxidants and whatever else is contraindicated. Reason: like other active molecule(s) of the artemisia plant, riamet may have a peroxide formation as part of its structure. this is at least one functional part. peroxides = oxidants; therefore take no antioxidants.

2. stagger intake of ANYTHING else your taking by "so many" hours AFTER peak activity of riamet. check as many lit. sources on the level of the PDR, in any foreign language equivalents of the PDR to find the time frame for staggering intake of anything else that might vitiate the function of the riamet.

3. For this next agent, search in Med. Abstcts., this website, for "Hog Pancreas vs. Mellitn"(or Bee venom) + malaria" (or p.falciparum(spelling off).

there is an abstract in med. abstrcts. on the comparative efficacy study of Hog pancreas vs. Mellitin(from bee venom) on the malarial bug.

Pancreatin has something in it, probably an enzyme, that has been used to zap the malarial 'bug' at two developmental stages, the second stage being the adult stage.

i'd stagger the intake of pancreatin and the riamet; furthermore, i'd start pancreatin, doing it for 4 days before starting the riamet,and, again, staggering the intake of both.

rationale(rank speculation): render babesia more susceptible to the riamet.

if i got a nasty reaction from the riamet, and knowing this is an oxidant(the peroxide moiety on the riamet molecule(s)), i'd have a powerful antioxidant ready to quell the reaction.

ask barb about riamet and artemisia annua compounds, and what to do and not do with th e riamet.

4. check accuracy of claim for this agent:

Bactrim: before mepron, there was bactrim for babesia, either alone, or with one or more other agents. ask Charlie from Texas about this. i think he might know about this.

[This message has been edited by pq (edited 31 August 2005).]

I've taken Mepron without difficulty.

I remember reading that if you don't take the Zithromax, you will become resistant to the Mepron very quickly.

I get horrible yeast, too, and I'm severely allergic to Diflucan. I'm worried about yeast with all the ABX I will be given.

I've been sick for 20 years without much treatment. I truly understand the angst of having been bitten!

I feel that Mepron was the drug that made me turn the corner, BIG TIME!
I took it along with zithro-doxy for 6 months and then with zithro-levaquin-bicillin for 3-4 months, then I gradute to malarone and I haven't graduate from this one yet.

The herxing during the first 3 months on meppy was out of hand just an eternal ride to the house of horrors, at some time I felt that if the Lyme hadn't kill me yet the meppy will do the job by sure. However after the first three months things really changed for the better and I keep improving.

Keep an eye on the lovely liver, you don't want to over-work it.

Take care,
Lymster

I did the Riamet..
just sharing my thoughts here for consideration, nothing more.

I did it after a long run with Mepron/Zith..
and if I had it to do all over again ..I wish I had used it before Mepron, because while it clearly impacted Babs very strongly, I later had recrudescence, that I summize was due in large part to having been on such a long course of anti-malarials
prior..

AND, when I was on the Mepron I was NOT on the reccomended high dose Zith with it..
I had to take less because of tinnitus..
so instead of 750mgs of Zith, I was on only 250 every other day..

at least according to Doc B's literature, if you are not on high dose Zith, resistance is a danger..
which I believe happened with me.
(and why I would caution using anto-malarials in less than precribed doses, you do have to worry even more about resistance with blood parasites than bacteria, even)

However..I think either way trying Riament before Mepron would be a good call.

Next..check with GiGi or anyone who sees Doc Kling..
because (and I can try and confirm this myself through my friend)but he said he has found Riament only works best when taken with I believe Niacin (???)..
and I have not researched why, only recently heard this.

Otherwise, I did the Riamet away from all other drugs, making sure of half life interaction and all..
both going in and coming out..

becuase while the artemether is out of your system quickly, peak blood levels within 2 hrs..
the Lymafantrine is in the system much longer (ten days I believe??)

I also made sure I took in little to no iron, as the artemehter is attracted to iron, and I wanted it going to RBC's and not food or supplement particles.
(Bpecks old posts in 2002 January detail this from when she did it)

I felt angry and spacey the first night..
why I think I had brain infection of Babs..
then interestingly my chronic fever (low grade afternoon fever) for the first time in over a year and a half..
shot up to 101-102..stayed there for a day..and then slowly receeded after the artemether was done..
and went to normal for the first time in all that time..

and stayed there for three weeks..

then the chronic unproductive fever returned.

I did a second course of Riamet at that time..

got the same exact response all around, slightly subdued..

and same thing happened..

and I did a thord, each one one month apart, same thing happened.

(now I have to caution, I found nothing in the literatire about doing this much in three months, so I took a risk, on my own advice, and would not reccomend it, tho I did know that Babs would not become resistant due to Artemehter..
that's why they are turning to Artemisinin in Maleria, they FINALLY admit this plant does not create resistance! Becuase my main problem WAS resistance at the time, I took three courses in hopes the thitd would finish it, it didn't..but it knocked it down)

so, clearly, it was reproducing from somewhere, I think liver or brain.
However Riamet certainly (IMO) cleared the blood and quick!

I felt the level was lowered greatly, but not enough for my body to finish the cleanup and deal with the sprouts, so I followed with more systematic address as it was reporoducing till I got the level down far enough.

After that I folowed up with specific dosing of Holley Pharmaceticals Artimisinin, basing the protocol on what I derived fron their research (available in hard copy from the company management)
on Artimisinin dosing, blood concentration, peak levels..and their studies in Maleria and Cancer.

Because I believe we have some tissue
infection, and mainly blood infection..
so are somewhere 'between' cancer and Maleria in Babesia microbiogically (?)

I chose to maintain peak blood level concentrations, and since Artemisinin looses it's potency in the blood by 50% when you are on it four days..
instead of staying on the reccomended dosage for aix weeks as is reccomended by many LL's who use it,
I pulsed four days on, three days off..
so I always had peak concentration while on it..after a three day break you have that concentration again.

That follow up seems to have done it, and no Babs symptoms in over a year.

YOU, may not need the follow up..
as I know of cases who cleared it with Riamet..
I had many reasons that make sence why I didn't.

But I would definately (if I were you) check into the Niacin (???) that Doc K feels is needed and why.

I would also be cautious that you have a Doc in town when you do it. You should consider also how much 'load' you have, how bad are your Babs symptoms now? Have you isolated them?

Best of luck!

I didn't croak on Riamet..nothing scary..I had a response that I actually found esciting, since my Mepron response was there, clearly...but not near as dramatic.

I also gained comfort from reading all the literature on it's use in thousands of small children in third world countries..
and it's given frely for self-administration to travellers to endemic areas...
tho it's not candy and Babesia is a chronic condition, and I think anyone using it must do extensive research (as I'm sure you have and I did) and have access to a Doc (tho no US Docs can prescribe it as it is not FDA approved here..
and I have many thoughts on THAT debacle, but will refrain from going there)

Best,
Mo

Forgot..

IF you can manage geting orders for three CBC's (with Differentials), one the day before Riamet, one during the three day course (preferably day 2 or 3) and one after..

You may find interesting results.

Those coupled with symptom response (my fever) were clearly showing response..

in my eosinophils (parasites and allergy marker), basophils, and WBC..which I found interesting and helpful.

Mo

WC, please, don't bother answering me. I think most people are scared who get TBD and scared when they treat it. I see you use this agianst me in another really hostile post on hyperbaric oxygen. You have been on more antiinfectives than I could count sheep. I would never take your approach. EVER. If it works for you grat, except it has bred totally resistnat h pylori for one thing (in your case) I've kept up fulltime work, albeit as a writer so that's relatively easy physically, the last 5 years. The things I've done have helped a lot. I don't attack others' metohds for themselves, even if I'd never use them. But you do. You keep attacking what I do and saying its useless. So I'd rather you NOT post to me. Thanx

Try not to be scare (I know easy for me to say). I was on Mepron for nearly 8 months.

I felt tired the first few days after taking it, but apart from that and feeling a little weird on the first and second dose, I never had any problems on it at all.

I think you'll be fine.

Oxy,

interesting thing about the B2, and babesial gametocyte.

FWIW, however, one problem w/rt lyme is that B2 is implicated in increased quinolinic acid production, perhaps by brain-(?), and/or other macrophages.

if you have a hard cp of old/defunct lyme news letters, i believe Tom Grier may have mentioned this in an old article.

Just wanted to let you know after 10 years of treating lyme and TBD's it's OK to be scared or reluctant to try a new med. It still is that way with me even after this long. Anyone who does not feel some sense of anxiety about it, more than likely hasn't felt some of the REAl threatening symptoms of this disease where for years the ER becomes 2nd to home due to severe herx's. There is nothing pleasant about knowing that in order for you to get better, it is a hopeful sign to feel worse. How NUTS is that.

In any event, regarding Mepron it is Ok to start in a reduced dosage, but you may want to check with your doctor. Like yourself, I am more sensitive to most meds...I did mepron for a year and had to start slowly due to the herx's and my condition at the time. I also did IV for 2 years...again slowly building up to full dosage as my body was too weak to handle it. Speak with your doctor about your anxiety of starting this and maybe he can alleviate your fears or at least recommend a plan for you. I never took Riamet as at the time it was not used as a treatment.

I was unable to post on this thread because
my username wasn't being picked up for
some reason, so I will reiterate here.

It is much safer to attempt new drugs in
the presence of a doctor in an office or
in the hospital. It is also better to slowly
go up on the dosage. This is the practice
that I have adhered to since becoming hyper-
sensitive to drugs and under the advice
of my drug allergist.

It has been a very practical and safe method
for me to take in drugs now. Also, the dosages for one body may not be necessary for another. My llmd has told me of one patient who takes 15 mg of Doxy every other day, and this for the last year..the patient has gotten better.

There may be something said also for pulsing
in drug sensitive patients as well as those
who do not detox fast enough.

All the posts Babe has received are very
supportive, but the real issue is with the
high probability of a true reaction. In
that case, Babe should be in the presence
of a physician who can help to stem it.

I understand your fear. I hate these bugs and these drugs too. I am extremely sensitive as well.

My MD allowed me to ramp up on both the Mepron and the Zithromax. He said there was no harm in doing that.

But, here's the truth: Mepron is not an easy Rx to handle for some people. I was literally spinning and seeing double the first week. Then, the fog lifted. But, I begged my MD to take me off this drug because I couldn't drive.

He talked me into sticking with it and by the second or third month I was starting to feel better - much. I stayed on Mepron for at least 9 months straight. Can't say I ever felt entirely "well" while on. The side effects were bothersome bit tolerable for me.

I had to stop the Zithromax several times due to gastrointestinal difficulties. Eventually, my MD took me off of it completely. If you read the published studies, it is very clear that resistance to Atovaquone and Babs occurs in 20% of those who use it as a monotherapy. Most of those studies were done on hamsters. That means 80% do fine without the macrolide. Don't know about others here, but I read that as a pretty good percentage. I don't know why people say definitively that Mepron will not work without a macrolide like Zith. Apparently it can and is used as such in other countries all the time. Or, am I reading the studies incorrectly?

All that said, I suggest you give the Mepron a try. Babs is awful. I couldn't walk before treating it. I did relapse recently and am back on the anti-malarials. And guess what, I feel crummy on them. I won't lie to you. Many people here helped me get through the toughest part of it. If you want to get better, you need to give the meds at least a chance.

I hope you feel better soon. I hope we all feel better soon. This is not fun. Go for it and keep us posted. There a many Mepron veterans here to help.

Anyway.
I appreciate the thoughts about mepron as a monotherapy...but here's what I'm thinking of doing after everybody's thoughtful responses (except for WC, who for some reason is on the warpath because I say my mild chamber has been a godsend and she's convinced its a useless piece of plastic that I should use as a bobsled--can you see me sledding down fifth avenue in NYC with it? --

ANyway, I will wait till my doc gets back. If I try mepron, it will be to see how I tolerate it, and if I *do* tolerate it, I may shift to malarone, which containes two antimalarials.

I also will try riamet and see if I tolerate it. If I do, apparently people have to do a couple of courses.

I have done a lot of research trying to figuer out why babs stays in your system. Mo sent me some great info, thanx Mo, and it clearly states that in dogs, it never goes away it becomes subclinical, so that has to be for us too, I'd think...at least with current therapies. That may be why its so hard to get rid of, and if you have lyme and other coinfections, your immune system never gets a chance to get it all in control. It's really a terrible double whammy to get babesia AND borrelia.

Also, I'm trying unsuccessfully so far to get a really good blood smear by a good pathologist to see how my blood is. I am too sensitive to drugs to initiate a course of heavy duty drugs without knowing for sure I am actively infected (the FISH test proves I have it, and I have a hunch it IS the missing link in my condition, nonetheless, I'd like my blood looked at and NOT BY QUEST!)

I am going to do some colonics and maybe a liver flush ahead of time, to help prepare my body.

I will start with one drop of Mepron IN my doc's office, just to see how I do.

Anything I've done, I started low and slow. When I started IVIG I did 1 gram. It took me about six months to bbuild up to 5 grams and that's about the limit for my tolerance. Etc.

I also TRULY appreciate people telling me about their own fears, and how they hesitated, and how they pushed through them.

This is a very tough road to hoe, tickborne disease, when you have more than one. AND outsiders just don't get it.

Thanx pq for the b2 information.
Oddly, I've been giving myself magnesium injections (THEY HURT!) to help me sleep better, and when I do so, I wake up so achy the next morning, I am positive its increasing my cytokines, and I'm not sure why. Maybe Marnie's theory is somewhat correct. I think the IM injections put a lot more into my system a lot faster.

Anyway...I also found it interesting that both riamet and mepron do better with fatty meals (increases potency). I don't know why.

But I've read the best chance is to use capillary blood ( a fingerstick or earlobe) and to prepare the smear directly , in other words not drawn into a vacutainer and allowed to sit for hours.

If you have a positive FISH why bother with a smear.

Riamet has artemether and lumefantrine, if I remember correctly-isn't lumefantrine an abx?

I would definately think Babesia, like malaria, sequesters somewhere in the body, possibly the liver, spleen or bone marrow.

Listen..........
I'm on my 14th week of mepron. Thank God!!!! I feel so much better. I take it w/ biaxin (in the same family as zith)

I'm hoping to only take it for 3 more months.

You may be tired at first. I had the 4th week herx which was minor compared to other people.

Everyone here understands your dilema of being scared. We've all been there.

My research mirrors Mo's -- I'm not convinced at this point that one can get rid of babs or Bb permanently (bart does seem to be eradicable) -- so my goal is to manage whatever bugs I have left with a strengthened immune system and whatever drugs will work in as few and small dosages possible.

On the other hand, though, none of the papers that I read about dogs (or horses) indicated anyone was willing to go to the expense of long term tx with atovaquone, so I don't know if it's a parallel case. There have been reports of success with Triclosan, and a babs-infected horse returning to racing, but as far as I know triclosan is not approved for humans.

I have the classic Irish peasant teflon liver, and tolerate abx well. Nonetheless, as I progress with treatment -- even as I get better -- I find my concerns about taking abx increasing, not diminishing. I guess I feel as if I'm going to hit that one abx that doesn't like me. For people who are chemically sensitive -- trying new abx must be like the Sourcerer's Apprentice opening up the spell book, hoping those damn brooms don't get away from you again.

I was on mepron/zith/artemisinin for 7 months; the hubby for 10. Worked very well for me, although there are some minor indications I may be having some babs "events" (occasions of stinky sweats, intense fatigue, and anxiety) after almost a year off the tx. Up until about 6 weeks ago I had a fair amount of energy, but that seems to be fading and I'm not sure why. LLMD thinks babs.

The hubby relapsed strongly and unmistakeably after 2 months off tx. He did one round of Riamet which he tolerated just fine but which did not help his sx. He went back on mepron/zith, and will be switching to Malarone. The LLMD also had him on Alinia for 2 months -- it's an anti-protozoal which also apparently opens cysts (but does not kill Bb). The herxing cycle indicated that he was treating both babs and Bb with this combo (he's also on bicillin for Bb).

I also assume that Babs must have some form that is similar to the hepatocyte that malaria uses to hide in the liver, but I haven't read anything to substantiate this.

Over the long run, mepron did cause diarrhea and it's own brand of fatigue. Neither of us felt particularly good while on it. The initial herx included an extremely painful headache that never went away, a lot of muscle and fascial pain in the legs, and intense flares of irritation (not the slow-burning constant LD rage -- these fits of temper came out of nowhere and went away pretty quickly).

If I had it to do over again, for the relapse the hubby would have done 3 rounds of riamet back to back, followed by artemesinin, before falling back on the mepron again. But -- the mepron tx is working, and he did respond to it much faster this time than he did the last time, with less of a herx. I admit to being disappointed that the artemisinin did not do as good a job on the babs as we had hoped, especially when the artemisinin herx was so profound (almost as bad as the mepron herx).

I continue to pulse artemesinin.

Here's an interesting tid-bit about acidity and babs:

Babesia
Malherbe WD, Immelman A, Haupt WH, Walzl HJ.
A study was made of the acid-base status of Babesia canis infected dogs judged unlikely to recover after specific babesicidal drug therapy despite the use of blood transfusion and other conventional supportive measures.

Such cases were invariably acidotic and responded well and often dramatically to supportive intravenous sodium bicarbonate administration.

In my psychiatric office, I had been listening for years to a subset of patients who were exquisitely sensitive to everything chemical in their lives. Medicine that required a dosage of 50 mg for the average person was too strong at 12.5 mg for them. Any commonplace side effects were magnified, and therefore, the idea of taking medicine had become anxiety producing to them and, I remembered, to myself as well, for the same reason.

At that time, the concept of a connection between medication and chemical sensitivity due to Lyme disease was unknown to me. It only occurred to me when, many years after a red ring rash on my arm, I finally was diagnosed as having Lyme disease and began to evaluate carefully my patients who had symptoms of tick-borne diseases. I found the majority of them to have extreme sensitivity to medications.

It turns out that Lyme disease tends to interfere with the metabolism of the liver in such a way that chemicals are processed too slowly. And there is a failure of "T4 thyroid hormone" to convert properly into T3 hormone at the cellular level. The spirochetal infection causes a Wilson's syndrome - a lowering of body temperature - which makes all chemical reactions sluggish. This causes a backlog of molecules, which are imperfectly metabolized if at all and which then act as if the person has taken an overdose. The side effects, not the desired effects, became the patient's main focus, and the person usually wishes to forgo future trials of all medications.

I'm sorry you and hub can't eradicate the babs. Is it microti or WA1? WA1 is supposed to be tougher.

the bicarbonate solution seems the safest.

ask your doc about doing a safe, i.v. dose of sodium bicarbonate.

approx. 1-2 years ago, someone once stated that they some baking soda and got some kind of flare up. he gave no conclusive interpretation, and did not state that he continued with, though he implied that he stopped this or was going to.

as i best recall, he complained of increased joint pain, then some kind of relief.