Topic: Babs relapse after 13 months of mepron... is this really malaria, or another bug?
liz28
Unregistered
posted
Hi, everyone on Lymenet.
I just stopped mepron treatment for babesia after taking it for 13 months, and had a full relapse within a week. Does this suggest this is really malaria, or another, much tougher bug?
posted
What dose of Zithro were you on with the mepron?
I was on a lower dose of Zith with it, and after 9 months treatment I had a bad treatment resistant case of Babesia.
Even if on the high dose of Zith, I would wonder..because babesia is one tough bug due to it's lifecycle, reproduction, and where it can hide...especially if you are dealing with other infections.
This is an excellent article if you haven't seen it yet --
Riamet followed by pulsed Artimisinin (100mg 3X a day -- 4 days on, 3 days off, in order to maintain high blood concentration as Art. decreses in concentration by 50% after three days) for four-five months cleared the symptoms entirely.
Blesings, Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
Yes, that also happened to me. I did mepron for 10 months (first 6 with zithro, last 4 with ketek) and I relapsed within a month, even that I was put on malarone inmediately after mepron.
The good news is that after a month OF RE-STARTING the mepron, my babs sx were almost gone, I am on month number 2 as we speak and so far is good.
Take care, happy turkey day Lymster in WA
Posts: 303 | From WA | Registered: Jul 2004
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posted
I'm convinved that for me the whole key to gtting the babesia was artimesia anua (and its extracr, artimisinin). I was on the atovaquone, too, as well as lots of garlic, both on pills and raw. It's definitely worth a try! DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
Ok. the same with me ....after almost 2 years on mepron with biaxin XL and plaquenil.
Six months during those years flagyl was added only for 2 days every week 500mgs twice each day.
I relapsed 11 months after stoppping the treatment for babs and focusing just on bartonella for the last months.
To be honest I was almost 100% symtom free after the treatment for bart and even thought I was "cured", so it was easy for me to notice when I was relapsing with babs or something else after all.
My regimen now is: Flagyl ER 750 mgs BID for 6 weeks in arrow and thn stop. Zithromax 600 mgs once a day for six months, mepron 5cc BID for six months, artemisia 500 mgs 3x day. My weight 124 lbs. Any opinions about this treatment.
AND I FREAKED OUT!!!!
Posts: 983 | From The sky | Registered: Feb 2005
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posted
BTW just wondering how you guys knew you were relapsing with babs..what symptoms ?
Posts: 983 | From The sky | Registered: Feb 2005
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liz28
Unregistered
posted
Hi, thank you very much to everyone for your responses. At least it's nice to know we are all having similar experiences with this. And Happy Thanksgiving to you, too.
Lymeblue, the symptoms were unmistakable. Dizzyness, vertigo, this glittery sensation around the sinuses, and then WHAM with fever and a general feeling of being flattened by a steamroller.
Mo, thank you for the incredibly depressing article, which will be useful in presenting to the doctor to convince him to keep prescribing mepron. Luckily, it's five years old, so maybe the outlook is less grim these days. Here's a possible next step: I'm going to call the CDC and the World Health Organization, and hear what they are recommending for drug-resistant malaria in other countries, where doctors are paradoxically farther along on this subject.
In answer to your question, I'm on ketek, but I was on zith and plaquenil for years, which created a nice resistant form of babs as well. You're right on target with that--these weaker protocols can create superbugs.
Lymester--that actually sounds a bit like what you went through. Hopefully, you are able to get access to stronger abx now? Biaxin was really lame for me, too. There are some people who get better on it, and more power to 'em, but for me it was like taking sugar pills.
Dave--it would be wonderful to do the garlic cure, you are definitely right about that. But I've gotta go to work, and will get strung from the fluorescent ceiling lights for bringing in stinky garlic.
Don't worry, guys, we'll figure this out. It's interesting--in the two years or so I've been on Lymenet, there were two noticeable, unavoidable facts:
Every day, it seemed like our situations were hopeless; and
Every six months, the treatments available to us did a complete backflip. You just can't stop progress.
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posted
If you are interested, I can send you an article on a study of treatment resistant babesia cases. It involves adding septra/bactrim to mepron +zith. I did this protocol. Also did a round of artemesinin with mepron + zith. One or the other has taken away babs symptoms after 8 mos total of treatment (only added art and septra at the end of this). Has been at least six months with no symptoms, so hoping it really is gone.
Maybe give this a try?
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Lou, please email me this article. My son has been battling Lyme, babesia & mycoplasma for 7 years!
Posts: 758 | From now TX | Registered: Mar 2001
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Lou, could you send me the study? You can send it to my email below, or PM me. Thanks!
I am putting in some old posts from Dontlikeliver. She experienced what she thought was a relapse from babs just a few days after stopping Tx.
She says at the end that her Dr feels that it isn't a relapse, only some kind of a herx from stopping Tx. As far as I know, she did not go back on babs Tx.
Babs is slow to produce, so it is not likely that it could come back strong, so soon. It would make sense though if it was a few months down the road. I'm not saying that you are not having a relapse, just that there is another possibillity.
dontlikeliver Frequent Contributor Posts: 1324 From: Registered: Oct 2003 posted 29 March 2005 10:09 -------------------------------------------------------------------------------- Hi Liz, Thanks for asking. Nothing's changed. I still don't know how to interpret what's going on, if it is a Lyme herx, a Lyme relapse an instant return of Babesia after 8 monts of Mepron/Art. or what.
I feel out of breath quickly, with 'hot flashes' when I get up and do something, like after brushing teeth, showering, or making breakfast, etc. Have to lie down after a tiny bit of activity, then when I lie down it is that profound fatigue that makes you almost want to puke. I've had those sx before, just not for a really long time (pre-treatment, more than 8 months at least).
I figured I'd try to ride it out a couple of more days before I contact my LLMD, as it might pass (I hope so) and then I'd feel like a fool, esp. as I'm due to see him in 3 weeks. (it better get better by then or it's going to be hard to make the 11 hour journey just to get to New York).
The only thing is that with the out of breath feeling and a bit of dry cough and my lungs feeling 'hot', I wasn't sure if those were ONLY babesia symptoms and if so, why did they return only within a few days of stopping 8 months of Mepron/Artemesia. Do you know if those symptoms are EXCLUSIVE to Babesia? I have checked symptoms lists and they seems to cross over to me.
I wouldn't want to jump back on Mepron in a hurry if it wasn't absolutely crucial (the expense, I can't afford to).
So, it FEELS like a total relapse affecting every part........dull all over headache which goes down neck and spine and feels toxic, fatigue, nearly 24/7 chills, 'hot lungs' on/off, low grade temp, upset stomach, fleeting nausea, cough on/off and flushed face on/off....
Anyway, enough of ME - how are YOU doing?
DLL
I am trying to convince myself it is just a Lyme herx and nothing to do with babs or finishing Mepron right at the time this started, or having just got over the flu also.
it's confusing when it all seems to happen at once and you can't unpick it....won't ask my GP for help because he's trying his best to NOT help me at all.
dontlikeliver Frequent Contributor Posts: 1324 From: Registered: Oct 2003 posted 30 March 2005 16:20 -------------------------------------------------------------------------------- Last update on this thread. Thankfully I got the word from my LLMD that he does not feel Babs is the problem, but herxing, which I thought and hoped, and YEAST.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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posted
I don't know whether you have had a relapse or not, but since there seems to be general interest in resistant babesia, here is one article describing the use of septra + mepron + zithromax. Please keep in mind that septra is a sulfa drug and some people cannot tolerate it. Plus, it has a black box warning, so some docs will not use it. Also, you need to drink lots of water with it or suffer kidney trouble.
HIGH DOSE TRIMETHOPRIM-SULFAMETHOXAZOLE THERAPY: A USEFUL ADJUNCT TO COMBINATION THERAPY IN TREATMENT RESISTANT BABESIOSIS
Richard Horowitz, MD
12th Int. Conf. on LD & Other Spirochetal & Tick-borne Disorders April 1999, New York City
BACKGROUND: Krause described persistent parasitemia after acute babesiosis when patients were given Cleocin and Quinine (C + Q) (NEJM 7/98 Vol 339, 160-165). Horowitz described significant clinical improvement among chronic Lyme patients co-infected with Babesia microti when given Atovaquone and Zithromax (M & Z) (Abstract, 11th International Sci. conf. on LD, NYC, 4/98), however persistence of Babesia DNA & RNA has been noted with both regimens despite repeated courses of both antibiotics (Horowitz, RI: Abstract, 12th Int. Conf. On LD & Other Spirochetal & Tick-borne disorders, NYC, NY 4/99). Gupta et al describe parasitemia resolving with the addition of high dose Trimethoprim-sulfamethoxazole (T/S) to a regimen of Atovaquone, Cleocin & Quinine (Am. J. Hemat. 50:60-62, 1995). This report describes an improved treatment regimen for resistant Babesiosis using high dose T/S in combination therapy.
METHODOLOGY: Babesia microti infections were diagnosed among a cohort of 30 chronic Lyme disease patients using both IFA and PCR/RNA analysis (27/30 patients were PCR and/or RNA positive). Patients were divided into 4 treatment groups, using either low dose T/S (Bactrim DS, one QID) or high dose T/S (two QID). Most patients had already received either C+Q or M+Z alone, and patients self selected their treatment regimen based on their prior tolerability of the drugs. Group I received Cleocin 600 mg. TID + Quinine 650 mg. TID (C+Q) for 7 days with low dose T/S for 7-10 days. Group 2 received C+Q + high dose T/S for 7-10 days. Group 3 received Atovaquone 750 mg. PO BID + Azithromycin 600 mg. PO QD (M+Z) for 21 days with low dose T/S during the last 10 days of treatment, with Group 4 receiving the same regiment with high dose T/S. PCR and/or RNA analysis was performed post-treatment in all 4 groups, and success or failure was defined according to persistent parasitemia as evidenced by PCR/RNA positivity post treatment.
RESULTS: 22/30 patients (73%) completed the treatment regimen, with 2 patients switching from high dose to low dose T/S secondary to GI intolerance. 7 patients (23%) dropped out secondary to nausea, vomiting, rashes and/or flaring of symptoms. One patient was lost to follow-up. PCR and/or RNA analysis was able to be obtained on 18/22 patients completing the study. Group 1 (low dose T/S) had 3 failures and 1 success. Group 2 (high dose T/S) had 1 success and no failures. Group 3 (low dose T/S) had 5 failures, and no success. Group 4 (high dose T/S) had 7 successes and only 1 failure. Overall the high dose T/S regimen (groups 2 & 4) had an 89% success rate, while the low dose T/S regimen had an 89% failure rate.
CONCLUSIONS: High dose T/S when added to either C+Q or M+Z significantly improved the eradication rate of Babesia microti. Lyme disease patients with chronic persistent symptomatology may be co-infected, and those patients who cleared their parasitemia as evidenced by PCR/RNA negativity post-treatment showed significant sustained clinical improvement. GI tolerance was generally poor, and routine use of anti-nausea agents is recommended, with M+Z being better tolerated than C+Q. M+Z with high dose T/S may therefore represent an effective, better tolerated 1st line treatment for chronic persistent babesiosis.
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posted
And here is another treatment for resistant babesia, using lariam + artemesinin. I was afraid of lariam, even tho I had taken it as a prophylactic on foreign trips, figuring that the dose for treatment was much higher than the prophylactic dose. What I did instead was to use artemesinin with mepron + zithromax (or another macrolide). Still have that lariam sitting in the closet unused. Kinda doubt I will be making any foreign trips at this point.
I did both of these protocols (this one and the one above with septra, with modifications), so I don't know which helped the most or whether it was all of that 8 months of treatment (not continuous), or even if it is really gone. Did have what I called "hot head" after the treatment, but it is gone now and might have been lyme messing with my system.
With that long intro, here is the second protocol. It is also on the ILADS website. Mefloquine = lariam. Be sure to read about lariam before trying it, has caused psych problems in some people.
Mefloquine and Artemesia: A Prospective Trial of Combination Therapy in Chronic Babesiosis
Dr. Richard Horowitz 13th International Scientific Conference on Lyme Disease & Other Tick-Borne Disorders Emphasis: Pediatrics & New Research Hartford Marriott Farmington, CT 24-26 March 2000
Background: Babesiosis has previously been regarded as a benign self-limiting illness; however recent evidence has shown that patients who are either immuno-compromised or co-infected with Borrelia burgdorferi and/or HGE are at risk for a more severe chronic disease state (Krause et al, JAMA 1996 June 5: 275(21): 1657-1666). Krause also noted persistent parasitemia after acute Babesiosis (NEJM 7/98, Vol 339, 160-165) when patients received Cleocin+Quinine (C+Q), and Horowitz described chronic persistent Babesiosis after acute treatment with Cleocin+Quinine (C+Q) and Atovaquone and Azithromycin (M+Z) (Abstract, 12th International Scientific Conference on Lyme Disease and Other Spirochetal & Tick-Borne Disorders, April 1999, NYC), with persistence of Babesial DNA despite repeated courses of both antibiotic regimens. This report describes clinical improvement in a cohort of co-infected Lyme patients using Mefloquine (Lariam) + Artemesia (L+A) as either first-line treatment for infections with Babesia microti, or after having filled standard regimens with C+Q or M+Z.
Methodology: Babesia microti infections were diagnosed among a cohort of 70 chronic Lyme patients using IFA and/or PCR analysis. Patients were divided into 2 treatment groups: 52 patients (Group l) took 5 weeks of L+A, and 18 patients (Group 2) took 12 weeks of L+A. The first group was further subdivided into 25 patients taking L+A alone, and 27 patients using L+A with 1 dose of sulfa 1500mg (Gantricin) and Pyrimethamine 25mg (Daraprim) at the beginning of therapy. Patients received a loading dose of Mefloquine 250mg 5 capsules lx, followed by 1 capsule per week with Artemesia 250mg, 2, 3x per day. Group 2 received L+A for 12 weeks in combination with other antibiotics for Lyme and/or Ehrlichiosis. Patients received Compazine 10mg and Antevert (Meclizine) 25mg 1 hour before the loading dose, and subsequently every 6-8 hrs prn for nausea and dizziness. Patients filled out the Karnofsky scale after completing their therapy to evaluate ongoing symptomatology.
Results: All patients completed the treatment regimen as prescribed. The most common side effects were dizziness and nausea, lasting for up to 3 days after the loading dose of 5 pills, with rare neuropsychiatric symptoms (anxiety/depression). Administration of the loading dose over 34 days decreased these side effects. In Group 1, among the 25 patients taking L+A alone for 5 weeks, there was a 21.5% mean improvement in symptoms (decreased fatigue, joint and muscle pain, sweats, fevers, or chills, headaches, and cognitive difficulties) with a 12.5% median improvement as evaluated by the Karnofsky scale. Among the 27 patients taking L+A+sulfa/pyrimethamine, there was an 18.5% mean improvement, and a 12.5% median improvement in symptoms. 37 patients from Group l were tested by PCR analysis at least 4 weeks post therapy, and 3/37 (8%) were found to be PCR positive. Among 18 patients taking L+A for 12 weeks (Group 2), there was a 10.3% mean improvement with a 12.5% median improvement, with 2/9 (22%) patients tested remaining PCR positive post therapy .
Conclusion: Mefloquine+Artemesia is a new and improved treatment regimen for chronic persistent Babesiosis. This regimen has been studied and shown to be effective in malaria (Antimalarial Activity of Mefloquine and Qinghaosu (Artemesia): Lancet, Aug 1982, 285-289), but has never been studied in patients with infections with Babesia microti, a malarial-like illness. Optimal effectiveness was seen with a 5-week cours; however certain patients were PCR positive post therapy, and needed retreatment with either a different regimen, longer course, or higher doses of L+A (2q 5-7 days), which occasionally was of clinical benefit. Treatment failures have therefore been seen with all presently available antibiotic regimens for Babesia microti and may reflect an exoerythrocytic stage of infection establishing a chronic carrier state. Further research is necessary into the role, diagnosis, and treatment of piroplasms in co-infected Lyme patients.
[ 23. January 2006, 12:38 PM: Message edited by: lou ]
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Thanks, Lou. I forgot, I had seen these before, but its good to hear from someone who has really done the protocol.
Didn't someone, maybe Charlie, use Septra/Bactrim with Artemisinin?
I'm currently taking it with Rifampin to treat Staph and Bartonella, but know a lot of people struggling with WA-1.
posted
I don't know if charlie used those two together, he was definitely using septra for lyme. Maybe he will come along and tell us.
Do you mean you are using artemesinin or septra?
BTW, I had WA-1, bitten in CA in 1996.
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liz28
Unregistered
posted
Lou, Dr. H is the doctor I recently wrote about, the one who gave me weak babesia drugs for two years when he was putting other patients on stronger abx, and then put together a video saying he'd run a test where he deliberately put some of his patients on weaker drugs.
As I mentioned in previous posts, I'm not too thrilled about being disabled for five years with a curable illness and paying over $500 a month to this doctor. The only reason I haven't sued him, and I mean the only one, is because some of his more extreme longterm patients live near me and I don't trust them not to do something crazy.
I'm also not too thrilled about your putting those articles up, as I may have paid for them with my life. Which you knew, as I've privately emailed you to tell you that Dr. H was my ex-doctor.
If you have any decency as a human being, erase those posts. I don't care if you put them in a separate thread.
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Sorry, liz, you were offended. I was not promoting this doctor or passing judgement on his protocols. I posted this info by request on a thread about babesia relapse. This is the only info I know of that deals with resistant cases of babesia. If it helps anyone get rid of babs, then it is worth considering, without referring to the character or practices of the doctor.
I do think it is worth considering that when diseases do not respond to treatment that is the current standard of care, then doctors who care about the results will try other methods. They do not know in advance which will work and which will not, so some people get what may turn out to be the less effective. If it is already known exactly what will work for everyone, there is no need to do such trials.
I hope you see my logic here and will understand that people can be helped with this information on treatments for resistant cases. Do you know of other sources for this kind of information? I don't, so I posted this. Maybe you will not want to try these protocols because of the source, but several other people requested the info and maybe it will help them. Hope you figure this out and find something that works for you.
I would personally do business with the devil if he had a cure for me. Oh wait, think I already have......but no cure yet, at least for the lyme.
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Seems to soon to have symptoms (if it was Malaria).
Here's a good site on Malaria. It should be noted that It's not proven that the drugs for Malaria work exactly the same on Babesia. But I know the Docs us the same drugs - but maybe not in the same combinations.
All these Malaria treatments are measured in days or weeks not months - none of them are taken for months.
I tested + for Babesia, and took the drug ARTEMOS (b-artemether) mixed with Doxy for 5 days. And it worked. I was never on long term therapy for Babs (and I know I appear to be the exception rather than the rule) In 2002 - reading this list- and looking at the failures of Mepron/Malarone/Zith etc - is what made me decide not to go that route in the first place.
I don't understand why the LLMDs aren't changing their stragety? Are the people that don't respond in the minority?
Has anyone ever asked their LLMD what the sucess rates are for their drug therapy for Babs?
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Hi Micul, and all,
In the end, I was not having a relapse as far as I am aware. But, I had just stopped the Mepron, and also just had the flu, and was either herxing on the Bicillin or reacting to the Bicillin and between all of them I was feeling pretty ill pretty quickly.
However, my LLMD said it was 'impossible' to relapse within a week or whatever it was at the time.
I went through the summer on Ketek and improved a lot. Then had gut problems and had a 2 month break from ketek, during which time I had some mild symptoms that I thought may be Babs again (feeling like I was breathing through a thick cloth, not getting enough air or something)....but that has passed again.
So, I also wonder if that same, and other symptoms can also be a Lyme symptom and not necessarily babs.
DLL
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Barb, is artemos available in U.S.? I understood that although it was being researched (or similar compounds) nothing had been approved in this country. These compounds being synthetic derivatives and stronger than the herbal treatment of artemesinin that we are taking.
BTW, I have told this here before......a doc who worked with WWII vets at VA hospital said that some of them still have recurring malaria from long ago. These people have presumably had treatment in the past. And I don't think anyone can be sure that babesia does not have an exoerythrocytic stage. In fact, that was suggested by researchers in a published article about WA-1.
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
quote:Originally posted by lou: Do you mean you are using artemesinin or septra?
BTW, I had WA-1, bitten in CA in 1996.
I'm using Septra (actually Bactrim, same thing).
Seems like WA-1 is really hard to get rid of, from everything I hear. I'm hoping it isn't on my list of infections. So far it is the only one I haven't tested positive for. But hey, there's still time!
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Lou:
About the Bactrim thing and Malaria. Medscape just published that Bactrim 3 times per week protected AIDS patients in Africa from contracting Malaria... so I think the lit is just that it's preventative - as I beleive HCQ still is for some strains. I dont have the citation handy- but I'm sure you can find it.
There are different strains of Malaria- and each is resistant (or not) to a number of drugs.
Strains p.ovale and vivax can produce a Liver dormant stage and raise their ugly heads months or years after(that's why with Malaria Primaquine is used to kill the liver stage but cannot be used by people with a condition called G6PD-deficiency.) Of course in the 3rd world - if you have deaths from treatment - it's to be expected - in this country that would NEVER wash... because our lives are sooooooooooooo much more important than theirs (don't get me going on this blind spot that the world seems to have for 3rd world Malaria).
I have read that Malaria can persist in some people for years (strain related) also see ref 1, but most of the literature is on people who are constantly re-infected or people who were mis diagnosed. (see ref 2) This Malaria site is a good one- but there are others also that are pretty good. Since Bill Gates have been running the research show - there's more being done.
As far as my own treatment goes- no ARTEMIS is not approved in this country (nor is RIAMET- although it is now in Europe). I obtained it thru contacts who had contacts who had contacts. The REASON is not available in this country is because there's VERY little Malaria in this country AND although it's too exspensive for most the 3rd world (it's $1.00 per dose) it's too cheap and not a money maker to be marketed here.
My Drs. knew I was taking it, and they helped me prepare - i.e. I'm spleenless - so I needed an estimate of percent (RBCs) infected - A manual smear was done at Focus Technology Labs in Ca. and had a manual RBC profile before I started. My initial test was WB IgM positive at MDL. My Docs were were hands off - saying they wouldn't know what to do if I got into trouble and wanted no part of it really... (and I really didn't want them to get into trouble either) although one Dr. agreed to monitored my blood on day 2, 7 and day 15 after the first dose.
In Uncomplicated Malarie, in those without a spleen it takes about 30 days to clear dead parasites (the spleen usually repairs the RBCs and the body is cleared of parasites in about 4 or 5 days)). And based on Malaria data there's a 5% death rate in the spleenless during therapy. I was nervous.
I had 3 bouts of hypothermic shock (not bad enough to be hositalised, but pretty scary) and blood tests during that time showed a spike in eosinophiles -
An IGENEX FISH test 6 months later was negative.. but most importantly, my periodic fevers (of about 100.5F) stopped immediately, and my almost always very low body temp (when I wasn't having a fever) normalized to 98.6 for the first time in years.
It's been 2 years without symptoms- so I THINK I would have relapsed before now if I was going to .... ALTHOUGH my last blood test showed just out of range anemia, with high RBC turn over. SO Hmmmmmm is it coming back after 2 years?... I'm still symptom less... so as long as I stay symptomless- I'll not worry too much about it.
You know - who knows if you EVER get all of ANY of these bugs.
Here's an interesting fact to leave you with...
When a mosquito bites a person and infects them with Malaria- the mosquito may inject about 7 sporozoites that immediately travel to the liver. In 2 weeks- in complicated Malaria there are anywhere from thousands to hundreds of thousands to 30 billion of the parasites ready to infect the RBCs . The most vunerable are children under 5 with no antibodies. So alot die.
Sorry .. I'm starting veer from Babs discussion and focus on Malaria - but the parasites are similar - and there's way more data on Malaria than Babs - SO I studied Malaria first.
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