posted
I want to add at least one of these treatments to my Babesia protocol.
I know many patients are now taking cryptolepsis in lieu of artemisinin for Babesia treatment, as per Buhner's updated protocol.
Which one as worked best for everyone? I know both usually cause a bad herx, so is either generally better tolerated?
I'd appreciate any input from those of you who have taken either or both of these treatments.
Thanks! Erica
Posts: 408 | From California | Registered: Apr 2008
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Hoosiers51
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Artemisinin really does make me herx. I feel that the recent round of Mepron I was taking (1 tsp twice daily) was not doing much for me until I added artemisinin.
I have spoken with a couple other people that feel that artemsinin was a very important component in them "kicking" babesia.
I'm not sure if I've kicked it or not yet, but I have seen, heard, and experienced enough to think it's the real deal.
I'm sure you have heard all about art, since you're not new around here, but I just thought I'd put in my two cents.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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Some people add grapefruit juice to artemisinin to make it more powerful, but this should be done with caution. I would not recommend this until one has used artemisinin for awhile. I can't stress that enough....this stuff can be powerful.
But, grapefruit juice causes serious drug interactions with MANY drugs out there...abx, pain killers, sleep meds, tons of others (thyroid meds?)...so please please, to anyone reading this, check with your pharmacist before you play around with grapefruit juice. Posts: 4590 | From Midwest | Registered: Jun 2008
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quote:Originally posted by Hoosiers51: so please please, to anyone reading this, check with your pharmacist before you play around with grapefruit juice.
Hoosiers: Thanks for the advice and the comic relief.
I can't imagine more Babesia herx on top of Mepron, but do know that art (or the cryptolpsis?) is key to kicking it.
Does an artemisinin herx involve the air hunger and lightheadness the Mepron often causes? I could deal with another fatigue/headache/fever herx, but I think if my air hunger gets any worse I won't able to breathe at all.
Posts: 408 | From California | Registered: Apr 2008
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Hoosiers51
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You are welcome!
Well, I seem to be odd amongst babesia patients...
I had a positive Igenex FISH back when it only detected b. microti, but then recently I had a positive test for b. duncani from Sonoma County Public Health Lab (the tests might cross-react so we don't know what species I have).
So I must have some kind of babesia....but their are varying opinions among doctors I have seen as to whether it is even manifesting symptoms on a daily basis for me. (I am mostly fatigued...could be Lyme).
When I took Mepron first, I would vomit and not want to eat (probably herx, not side effect), and have memory issues, and sometimes night sweats.
Second time on Mepron, hardly any herxing. Just felt more tired, but could have been a side effect.
Then when I added artemisinin, I would get night sweats, and sometimes vivid nightmares, and sometimes an increase in energy.
But, I have never experienced air hunger, not as a symptom, or from herxing. So I can't really advise you on if artemisinin would bring that out more for you. For me it brought out the night sweats, as I mentioned.
The other funny thing is that I didn't have night sweats when I started Mepron this time around, nor did I have them during if I wasn't pulsing artemisinin, but when I stopped the Mepron because it was apparently not helping me, I then started getting night sweats, and they definitely seemed to be the babesia kind to me. Lovely.
I know I just gave you a ton of info, but that sort of sums up my babesia "herx" experiences. Hope it helped some.
Posts: 4590 | From Midwest | Registered: Jun 2008
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CD57
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Hey Erika, our LLMD told me to take crypto and add artemesinin after the crypto. I guess you are right w/Buhner moving away from art to crypto. But would like to hear from some crypto users.
I think it -- crypto--also gets gram negative bacteria, so should be good for bart too?
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pamoisondelune
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posted
I am scared of Cryptolepis, because of the following science abstract that says that cryptolepis is "profoundly cytotoxic". Profoundly cytotoxic?? could be an anti-cancer drug?? What is it killing in MY body?? Is this safe???
(I couldn't post the whole article;message says can't post some parenthesis in HTML or whatever.) I'm trying to post just the title then:
SAFETY EVALUATION
The Popular Herbal Antimalarial, Extract of Cryptolepis sanguinolenta, Is Potently Cytotoxic Charles Ansah and Nigel J. Gooderham1
Molecular Toxicology, Faculty of Medicine, Sir Alexander Fleming Building, Imperial College of Science, Technology and Medicine, Exhibition Road, London, SW7 2AZ, UK
//toxsci.oxfordjournals.org/cgi/content/abstract/70/2/245?ck=nck
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posted
Hoosiers: Besides the vomiting (which much have been awful and hopefully didn't last long ), your Mepron reactions sound pretty typical from what other patients have reported on here. Night sweats (which I've thus far been able to avoid!) are obviously very common Babesia and Babesia herx symptoms.
I've had also had lack of appetite on Mepron, and didn't even know for sure it was Mepron and/or babs-related until I read others post about that side effect too. As for memory issues, I'd be interested to find out how many others on Mepron and/or other babs treatments have this too...I definitely do!
Clearly your LLMDs would know better than me, but I am intrigued as to why they doubted you having babesia. It makes sense that species can cross-react in testing, but doesn't getting positive babesia tests from 2 labs pretty much seal the deal? We know that co-infections are often clinically diagnosed to due the frequency of false negatives. Did your MD's explain the likelihood of false postives from 2 separate labs?
Or do they think what the labs are picking up could not be babesia, but rather another co-infection? Now THAT would be interesting! But then again night sweats are such a classic babs symptom. Can Lyme or other co-infections cause that?
Sorry for all the questions! But I find this issue especially fascinating because I have tested slightly positive B. duncani. My LLMD (who I think may also be your LLMD?) was not sure when he saw the test results if the results were accurate and he did mention cross-reaction...which I clearly still don't understand.
But given that my main symptoms have always been crushing fatigue with fevers, to me Babesia seems to me a likely culprit? I often have low RBC and hematocrit (with normal iron levels) which I think also points to babs vs. the other infections?
Although I'm pretty my LLMD is now 100% sure I have babesia based on his exams and my reported symptoms since starting Mepron.
PS. Is rambling a symptoms of babs? Posts: 408 | From California | Registered: Apr 2008
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quote:Originally posted by CD57: Hey Erika, our LLMD told me to take crypto and add artemesinin after the crypto. I think it -- crypto--also gets gram negative bacteria, so should be good for bart too?
Yikes, crypto AND artemesinin?
Are you supposed to add in artemesinin while on the crypto, or wait until after you're done with crypo?
And if crypto hits bart too, that sounds like a scary double-whammy. I'm naturally cautious after the Rizol experience (though I know I didn't give that a real chance).
quote:Originally posted by CD57: But would like to hear from some crypto users.
Ditto! C'mon all you cryptolepsis veterans...we know you're out there!
I know the Mand-ster had a bad reaction to crypto, but also started along the the My Rizol so may have been bart-herx overload?
I started this thread because I'm seeing the LLMD today, and suspect he's going to want me to start the crypo when I ask him about adding in art. I want to be armed with info about others' experiences before deciding to give it a try or insist on sticking with the traditional artemisinin regimen.
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Hoosiers51
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Haha, I certainly don't mind the rambling.
We do have the same LLMD. It was my previous LLMD who thought babesia was likely my main culprit (and responsible for my fatigue, or at least....he said we need to treat babesia now), but it was our LLMD who told me he thought Lyme was my main issue, unless I misunderstood him. I just started seeing him.
There was no doubt that I "have/had" babesia, but I think he meant that even though it may be "active," my body might be "handling" it well enough, and that my primary symptoms....fatigue and spaceyness, are likely Lyme and not babesia.
He basically inferred he wanted to hit the Lyme hard, and just treat babesia with herbs, and see what happens. He said that for my babesia, it might only require herbs.
Which is fine....I have no objections to using herbs, I am just hoping it is enough. I am worried that my previous LLMD was right that my illness could all be hinging on the babesia. The reason I left previous LLMD though is that he wasn't agressive enough....he wasn't willing to try higher doses of Mepron or Malarone on me when the lower doses failed to get me better, or show substantial improvement.
Maybe however, my (our) current LLMD is right....he does seem to have good intuition, but granted, people make mistakes. I also wonder if maybe I didn't emphasize all my symptoms well enough.
But regardless, the point I was making in the previous post isn't that I don't think I have babesia, but that mine doesn't seem to be like most, with the air hunger and the heart palpitations. I do remember our LLMD asking me if I have either of those symptoms, and of course I had to say no.
Overall, time will tell. We'll see what ends up getting me better....I'm sure if one thing doesn't work, he'll try something else. He said we'll use babesia drugs if we need to, so I'm sure I'm in good hands.
But anyways, that brings us back to the title of this post....art and crypto....those may become my new best friends Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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PS--I also know babesia is still in me because I still have sweats from time to time, and still herx on art, it's just a matter of how significant is this compared to the load of the other infections.
And sorry for being so wordy!!!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Pam: Thanks for the article link! I read it twice, but still don't really understand whether crypolepsis has shown toxcity in humans?
I tend to be unusually sensitive to most herbal treatments I've tried, so am especially hesitant to try anything that has not been used long enough to show an established pattern of expected reactions and side effects.
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Hoosiers51
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PPS---this is an "obvious"...but please don't mention my case to him. I'm sure you won't, but I feel better saying it Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Yep, the Mand-ster did have a horrible reaction to the cryptolepsis. Am I the only one who tried this in lieu of art?? I must one of the experimental ones.
Yes, I did start the RizolMy but discontinued after about 5 days. I was on crypto 17-20 days, can't remember exactly. I literally pushed through it. My symptoms were crushing fatigue, depression, extremely disoriented drunk feeling. I could barely function. I was also on bactrim and mepron for babs. BUT I must say that after I gave it up, I felt better than before I went on it. Headaches are now mostly gone, neck and spine pain better but not completely gone...and my tolerance for mepron has increased. I don't dread taking it anymore.
If he wants me back on it I'll take it again, but I have to make sure I have no obligations. I'm willing to try art too, as I know this is the more commonly used adjunct for babs.
Posts: 348 | From maryland | Registered: Jul 2008
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Keebler
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posted
-
Mentioned above, this article actually says Crypto has " . . .anticancer potential."
Here Cytotoxic means a good thing - toxic to specific bad cells . . . not to the body in general.
The Popular Herbal Antimalarial, Extract of Cryptolepis sanguinolenta, Is Potently Cytotoxic
pamoisondelune
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posted
Yes, anti-cancer, but what other cells is it killing? How do i know which cells it's killing? Maybe it kills kidney cells too? The article doesn't examine that, does it?
I'd like to know!
from pamois.
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Keebler
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posted
-
Other articles - at Pubmed and elsewhere - discuss this further.
However, I've looked over dozens of articles and have seen nothing to indicate any problem.
Cryptolepis: an African traditional medicine that provides hope for malaria victims.
HerbalGram. 2003;60:54-59.
Excerpts:
In traditional African medicine, the root cryptolepis (Cryptolepis sanguinolenta) is used to treat a host of diseases, including malaria, jaundice, and hepatitis.
Compounds isolated from this plant have been shown to have antibacterial, antihyperglycemic, antiinflammatory, and antimalarial activities.
The focus of this review is on the antimalarial potential of cryptolepsis, with emphasis on the safety and efficacy of a recently formulated tea derived from the root.
. . .
Aqueous extracts of the plant, which are usually used in herbal medicines, have been shown to be less effective than ethanolic extracts in some studies.
Cryptolepis has received increasing attention in recent years from the Phytomedicine Division of Phyto-Riker Pharmaceuticals (Accra, Ghana), which has developed an herbal tea (Phyto-laria�) from the root of cryptolepis for the treatment of malaria.
. . .
The efficacy of Phyto-laria was assessed in an unpublished, open-label, uncontrolled clinical trial conducted in Ghana.
Forty-six adult patients with uncomplicated malaria were provided one tea bag (containing 2.5 g of cryptolepis root powder and flavorings) for consumption three times per day for five days.
The tea was prepared by steeping the tea bag in approximately 2.5 g of boiling water for 5-10 minutes. (It is unclear exactly how many total tea bags were provided to the subjects.)
A mean parasitic (Plasmodium falciparum) clearance time of 82.3 hours and a mean fever clearance time of 25.4 hours were observed. . . . A previous study of an aqueous extract of crytolepis supported this finding.
Because safety is paramount for any agent used to treat disease, the safety of Phyto-laria was assessed in vivo by administering it orally to rabbits, mice, and rats.
The tea bag formulation was shown to be safe; the LD50 (the dose of a chemical that kills 50% of a sample population) was greater than 2,000 mg/kg, "more than two orders of magnitude higher than the effective dose."
Rianna
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posted
Cryptolepsis over artemisinin for me anyday.
You could give me any drug on earth over artemisinin as that drug no matter what anyone says was Neuro Toxic to me.
I NEVER post anything like this to 'scaremonger' but honestly Artemisin was so Nerotoxic to me it was the most unbearable thing I have ever experienced.
I am not the only one as on our european site 'Eurolyme' others have found the same where they have lost there balance for months, for me I realised quickly what was going on and implemented quick detox and even then it took me 6 weeks to recover after just 2 days of 200mg.
I assume as so many cases of Neurotoxicity have now been reported that is why so many LLMD's are saying to move away from Artemisinin - Is that why Buhner has updated his protocol?
Again it may have been a P450 metabolism problem for me and others meaning we only need Baby dosages but I would try anything before taking that again.
posted
Hi, I am now having artemesinin in my hands and I dont know what to do. Am very afraid.
I am now taking mepron everyday twice a day since october before since may 3 times a week and that babesia doesnt die and i want it to leave!! I was 6 years to be suffocating and I need it to stop.
I'd like to know if this is safe to take it under what I am taking now.
I am taking mepron twice a day 2 tsp+ doxy 100 mg x 2 daily + diflucan 100 mg daily + Flagyl 250 mg x 2 5days on and 5 days off flagyl. Do U guys think that adding 250 mg x 2 daily of artemesinin is too crazy.
I am 9 months of treatment only but I want to heal. Ready for everything just dont want people around me to call the hospital.
Thanks!
-------------------- Lyme-co infections Posts: 27 | From Canada | Registered: May 2008
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Keebler
Honored Contributor (25K+ posts)
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posted
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Fannou,
Don't be scared. Just know the product. Know the likely reactions - good or icky (so you can be prepared with liver support that can also work with mepron )
I stress liver support because that can make the difference. And, here, many lyme patients cannot detox a certain classification of meds/chemicals that use the Cytochrome P-450 pathway. If that pathway is stressed, more toxins accumulate and it's not so much a product that may be toxic but the problems with a person's liver.
However, many do fine. If you generally do okay with meds, etc. that is a good sign.
First, though read all you can about all your options. Then find out more about what is likely to work best for you. Anything you start anything, start very slowly at a very low dose.
-----
If you are taking mepron, and the other Rxs, are you under the care of a LLMD?
I always get a bit nervous when someone on several Rxs is about to add something else. It's really best to have a LLMD who knows your infection load and the state of your liver support to guide you.
However, I am well aware that many here don't have doctors.
I can't comment right now on art. at that dose. It's not necessary excessive but it'd be best to start lower. You might also want to study Cryptolepsis more first.
It's always good to read what several authors say, so that you get a well-rounded look.
The three books below offer information. Some people find that art. has helped, but it's no walk in the park. Still, don't be scared away. If you have a LLMD, talk to her/him about what else you can do.
If you are on your own with treatment, give yourself some time to learn all about it first before making a decision.
Until you read each of the books below that offer discussions about artemisinin, you won't have the knowledge base for your decision. If you need help locating the books, your local lyme support group may have them to borrow.
Good luck. "Better" certainly can be in your future.
==============
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
While not about lyme, this abstract is just one example of what a powerful help art. can be in ``combination therapy'' with other drugs. What they are treating here is tough stuff.
Art. has been used around the world with no problems. It's just that lyme patients have a lot on their plates (and a lot going through their livers). Balance and rotation is a skill that takes a while.
Preclinical studies demonstrating the antischistosomal activity of artemisinins, and clinical trials showing the safety and efficacy of these drugs, are summarized in this review.
Furthermore, the effect of artemisinin-based combination therapy on young children co-infected with Plasmodium sp and Schistosoma haematobium is described, and the promising activity of artemisinins against intestinal and liver flukes in vivo, as well as against cancer cells is reviewed.
-=======
I'm sure there are better articles but this is a start. Knowledge is power. Both from outside and inside.
NARRATOR: Mau considered everything western to be decadent including medicine. . . .
. . . Then they tried a herb called Qing Ha, known in the west as Artemisia. Ying Li and her colleagues followed an ancient recipe two thousand years old for making a kind of tea, that it was claimed could cure malaria.
They distilled the tea and added chemicals to refine it until they had isolated the active compound.
Then they made a drug called Artemisinin which they tried out on patients dying from malaria, the effect was remarkable. . . .
[the conversation can be followed from there on this topic]
Yes i am under the care of a LLMD, but she doesnt use regurlarely herbs i think.
I am fgrench and it is very hard to reaad even french though (neuro) so i feel more like going on with what she gives me, herx and then see what happen.
Reading too much makes me very bad.
I will ask her about cryptolepsis.
Thanks.
Fannou
-------------------- Lyme-co infections Posts: 27 | From Canada | Registered: May 2008
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Hoosiers51
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If you are afraid of artemisinin, you can try artemisia (which i believe is the whole plant), which some say is weaker. I know they sell it on www.iherb.com. It is by Nutricology.
I would give it a try, but start at very very very small dosages. Open up the capsules and pour some of it out if you have to. That is what I did in the beginning. Only take what you feel you can handle.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Keebler
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posted
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Fannou,
Some of this research is also available in French. Artemesinin is used all over the world and research published in many languages.
I understand what you say about reading making you worse - either from the vision-brain stress or the sadness and complexity of all this.
MariaA
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Member # 9128
posted
I've been off Mepron for a few weeks due to side effects and I started using cryptolepsis in fairly large doses. I have definitely improved since then with none of the side effects. It's hard to say this is just crypto though because I'm also on another herbal formula that I odn't know the composition of, which my LLMD"s office is testing out, called A-bab. Since I'd been on A-bab before and didn't have this kind of improvement on it plus Mepron (I was plateauing at the time I stopped taking the Mepron/Biaxin but kept taking the A-bab), I think it's the crypto that's giving me continued improvement.
Also, the difference between cryptolepsis and artemesinin is pretty big in terms of how they work.
Artemesinin also gives people some unpleasant 'feeling high' side effects, I haven't felt any of this since I went to cryptolepsis and stopped trying to use artemesinin. That said, I"ll definitely use artemesinin again if I feel like I"m plateauing next..
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
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posted
Also, when I first got sick this summer with what I think is a new infection with babesia (I had Lyme alone before that and had gone into remission but was reinfected this summer), I tried cryptolepsis and my herbal babesia formula for a month or more before starting the Mepron- and it didn't seem to really be making a dent in my symptoms at the time. I suspect that if you're really ill you may see less obvious results with cryptolepsis than what i'm seeing right now, after having already treated for months.
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
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posted
Buhner says in some book that he wrote before he researched Healing Lyme, that artemesia annua may have fewer side effects than artemesinin (artemesinin is a synthetic version of the active ingredient in artemesia, but it's difficult to get enough artemesia annua to have the desired effect).
-------------------- Symptom Free!!! Thank you all!!!!
posted
I am interested in the cryp as well.. dosage and how long did you have to take to knock it out.. was cryp enough? Thank you.
Posts: 861 | From USA | Registered: Dec 2008
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posted
I am seeing a LLnaturopath who has me on Art (1600mg/day) and Crypto (120 drops 2x/day) and two Nutramedix formulas (Mora and Enula) AND my LLMD has added Zithromycin. to the mix ....All at the same time!
Initially I went crazy with brain fog, air hunger, depression and anxiety, but after an adjustment to a psych med I feel much better. I am now thinking i must be tough as nails and maybe just maybe it won't take so long to get through the treatment.
-------------------- Breathe in. Breathe out. Breathe in... Breathe out... Breathe in............. Breathe out.......... Be still. Posts: 10 | From Sacramento | Registered: Feb 2009
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MariaA
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I think the study they're talking about is one of the malaria studies, and that there haven't actually been studies on this for
I'm not sure where the info in the original question, where the poster is asking about a 2 week course, is coming from.
I noticed you are symptoms free. I am 28 years old and suffering immensely. I have a beautiful 3 year old son and I am bedridden. My top complaint is air hunger or feeling like I'm being suffocated or not enough oxygen to my body and brain. I get panic attacks and anxiety constantly. I am weak and my heart is weak. I get feelings of a swollen brain so much so I have trouble placing my chin to my chest. I am being suggested the use of an IV PICC line but I really don't want to do it. What methods, herbs, abx did you use to get well?
Thank you
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bluelyme
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Tfjr ...welcome ...you may want to make a new thread ..do you trust your llmd ..babesia meds likely wont be iv ....mepron malerone ,alinia ....The herbs may provide relief
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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WPinVA
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posted
I have taken both.
I know Art works for me. I have less clear memories of the Crypto.
If it is a factor, I find Art easier to take - comes in capsules, while Crypto is a liquid that was kind of bitter as I recall. So my compliance was better with the Art.
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![[Smile]](smile.gif)
![[Frown]](frown.gif)
), your Mepron reactions sound pretty typical from what other patients have reported on here. Night sweats (which I've thus far been able to avoid!) are obviously very common Babesia and Babesia herx symptoms. ![[Wink]](wink.gif)
![[Eek!]](eek.gif)
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