posted
For those of you thinking about trying cryptolepis, the herbal preparation derived from the root of an African plant, I have to tell you that this stuff is without question - no ifs ands or buts - the most VILE-TASTING substance in the known universe.
The dose commonly prescribed for babesia (and malaria) is three teaspoonfuls a day. To get a mental picture of what it is like swallowing this swill, imagine swallowing straight GASOLINE. It is THAT BAD.
If you think you will just dilute it in a big glass of water...................NOT!!! Even that does nothing to the taste and you will then have to drink a full glass.
I have taken it for four days and I QUIT. I was getting depressed all day just pondering the next dose.
Unforgivably horrid, nasty, and just plain evil. A word to the wise, since it ain't cheap.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
Sounds like a good thing to put in your own caps!
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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canefan17
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posted
Maybe throw some maple syrup, molasses, or honey into the tincture/water mix
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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lululymemom
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posted
You have to use it with a chaser.. we used fruit juice to mask the after taste..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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seekhelp
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If your Babesia is bad enough, you'd probably drink gasoline to rid it. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sammy
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posted
I only diluted my first dose in a swig of water.
Imagine my surprise! I about choked to death!!!
It was the most bitter tasting herb I had ever taken. My doctor had not warned me to mix it in a full glass of water. Wow. I was unprepared.
After surviving that initial surprise, taking it in a glass of water is no big deal. You will probably get used to it if you keep taking it.
Posts: 5237 | From here | Registered: Nov 2007
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blinkie
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posted
I agree...it tastes horrible. But, I agree I'd drink almost anything to get well! I also take a chaser..usually a jelly belly...seriously.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
A taste warning, really? Taste is the least bothersome thing in this wretched mess of a disease compared to everything else we've been through. I would eat a pile of manure daily if I was 100% positive it would get me out of this.
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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Rumigirl
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So the real question is: is it getting you better, anyone? I know this takes a long time, so you may not know yet, but any progress?
How long have you guys been taking it? And are you taking it with Mepron or Malarone and Zithromax? With Artemisinin?
I agree, as would most; I'd drink anything if it worked! Although masking the taste some would be nice.
Posts: 3771 | From around | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
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posted
- I did not find it distasteful at all. Sure, it's no milkshake and a bit medicinal in taste but far from awful. 1 tsp in 1/2 cup of water 3 x day was easy for me . . . perhaps because . . .
years ago I took liquid magnesium. I had to and it helped. That was awful tasting to the max. So, nothing else compares and I would rather medicine taste like medicine. It's just for a few seconds. Better than having babesia forever.
I think our body NEEDS to taste it, just as it is. There may be some instruction to the body then to work better than if it tasted like a lollypop. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- "Maybe throw some maple syrup, molasses, or honey into the tincture/water mix " someone wonders?
Well, might as well flush the money down the toilet then. When that stuff is added, it could change the chemistry of the plant tincture. Even if not, it could make it harder for it to work in our body.
However, there is one that added peppermint essential oil. The pharmacist here also thinks the taste is vile so tested out various ways to make that better for patients, especially kids.
A doctor must order it for you, though:
Mid-February, 2012 - I had a nice phone conversation with Randy, the compounding pharmacist who makes this there. He's very interested in lyme and his being able to obtain this has helped some LLMDs get this to their patients.
He has attended some of the ILADS conferences - (he noted one in California where he met several LL NDs from my state). He's been in direct communication with Dr. H, who has the most knowledge of this for babesia.
He said he will be glad to email or talk with anyone who has a question.
They have it in stock now.
It MUST be ordered by one's MD or ND (or a doctor with similar medical credentials).
Patients cannot order this themselves
(this differs from the other two suppliers: Woodland Essence and Green Dragon Botanicals - both of which are currently - and often - out of stock due to supply limits.)
A one month supply in a pharmaceutical-grade substantial weight, amber plastic bottle.
One 450-ml bottle is $90.
3-day shipping included - that measures out to the top dose of 1 tsp. 3 x day, a one month supply.
In Stock, as of yesterday and he expects their supply to be okay (paraphrasing here).
They make this a bit differently by adding some ESSENTIAL OIL OF PEPPERMINT to improve the taste. No artificial flavors, though, he assures.
Their tincture may be darker than the other two suppliers' of this as sometimes they make it from a concentrated powdered root, rather than "steeping" the root for themselves (but that is also done there at times).
You might call the place where you got your Crytoplepis and ask if you might add something yourself. Perhaps putting it in peppermint tea? But do ask an herbalist first. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks all for the comments and advice. Plugging your nose won't work with this stuff since its the extreme bitterness that makes it taste so bad. The taste buds for bitterness cannot be blocked by
holding your nose. That would work for some meds that have an awful smell component that we perceive as taste - like NAC for example. Has a rotten-egg smell (sulfur). I have no problem with it or any other stuff, and I can swallow a dozen big horse pills and capsules in one gulp, but this cryptolepis is out of the question for me. I felt like I was being poisoned.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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bcb1200
Frequent Contributor (1K+ posts)
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posted
Suck it up, man. I'm not sure what brand you use (I get mine from Infuserve). I admit it tastes bad. On my second day I nearly vomited after taking it.
But after a month of taking it I have no issues. i've gotten "used" to it.
Keep it up..it will get better (and it is worth it.)
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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quote:Originally posted by bcb1200: Suck it up, man. I'm not sure what brand you use (I get mine from Infuserve). I admit it tastes bad. On my second day I nearly vomited after taking it.
But after a month of taking it I have no issues. i've gotten "used" to it.
Keep it up..it will get better (and it is worth it.)
My cryptolepis is from Woodland Essence (sounds so floral doesn't it?). You're taking 3 tsp. a day?
Well.. I haven't thrown it out, still in the fridge where it's killing any and all microbes lurking about.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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quote:Originally posted by manybites: Having received two bags of blood transfusion because babesia almost killed me definitely makes you drink it without any question.
Yes I relapsed non stop from babesia for the past 4 years .Drinking crytolepsis is nothing comparing to ER and passing out from babesia.
I hear you, that experience would definitely put things in perspective. How is your babesia now? How long on cryptolepis?
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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quote:Originally posted by manybites: I live a nightmare .Please go for eradication of babesia at all cost.Lyme can torture you but you can be without the meds for some time but with babesia activated -you are in death bed in a couple of weeks.
The hospital will not save you .
Wow, you really have been thru hell and back. I know I have some babesia in addition to Lyme, erlichia too. Bartonella dunno cuz I never tested positive for it.
I find it hard to tell which symptoms are caused by what. I have been treating now for 3 1/2 years, incl things like Mepron, Malarone for babesia.
I have come a long way, but I have never stopped sweating like a pig. I have DAY sweats, rarely nite sweats. Is sweating always babesia?
Did you watch any of the ILADS conference presentations? Dr H talks about cryptolepis, also about Coartem, a drug. Apparently Coartem, according to Dr H, can work in a matter of DAYS. Ever try that?
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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17hens
Frequent Contributor (1K+ posts)
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posted
paulie, have you read on here about FL1953? You might want to get tested for it.
It's babesia symptoms with lots of sweating.
If you have it, from what I understand, you won't get better until you treat it.
Mind if I come up and get your bottle of cryto? I'll pay ya!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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quote:Originally posted by 17hens: paulie, have you read on here about FL1953? You might want to get tested for it.
It's babesia symptoms with lots of sweating.
If you have it, from what I understand, you won't get better until you treat it.
Mind if I come up and get your bottle of cryto? I'll pay ya!
No, what is FL1953?
If you want the crypto, you can have it. PM me your address and I'll mail it. No charge. I have two bottles, one opened but mostly full. I think that's about 4 -6 weeks worth. Hope you like GASOLINE.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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quote:Originally posted by jlcd1: paulie, brucella causes sweats too. Dr. H also mentioned that at the conference.
Hmmm................this co-infection list gets longer and longer. I have never been tested for brucella, I don't think. I assume the tests are not reliable like everything else? What is the treatment? Did I read somewhere that this is the one you can't eradicate?
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
i hope you didn't read somewhere that you can't eradicate it. I think it's rifampin, doxy and zith. I felt the best while on all 3.
I'm not sure if the tests are as bad as the rest. I used a local hospital lab for all my tests.
Posts: 908 | From Albany | Registered: Nov 2008
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nefferdun
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Member # 20157
posted
I prefer it to mepron! I did not realize it tasted so horrible until I read your post. I put all the tinctures into the same small glass of juice along with mangosteen and goji. They all taste wretched but the blueberry juice helps me get it down. I also take my earthworms (boluoke/lumbrokinase) at the same time. Now that is an appetizer! Then I swallow 10-15 more supplements with a glass of water.
After four years of treating this you toughen up.
I did not realize you have to take three teaspoons. I am only taking a half a dropper twice a day.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
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posted
Just found out I am taking the tinctures incorrectly. When I watched the video link above there was one to Dr. R talking about samento and banderol. He said to not take them together or with supplements, food or meds.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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quote:Originally posted by jlcd1: i hope you didn't read somewhere that you can't eradicate it. I think it's rifampin, doxy and zith. I felt the best while on all 3.
I'm not sure if the tests are as bad as the rest. I used a local hospital lab for all my tests.
Did you test positive for brucellosis?
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
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posted
- nefferdun
Do you have that link handy?
There are often questions about those products and it might be good for everyone to have that link to reply the next time we see someone in distress from wrong use. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
paulieinct: I did test positive for brucella abortus, that's the strain that comes from cattle.
nefferdun: I didn't know you had to take them separately. I would also like to know where that link is. Thanks.
Posts: 908 | From Albany | Registered: Nov 2008
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quote:Originally posted by nefferdun: I also take my earthworms (boluoke/lumbrokinase) at the same time. Now that is an appetizer! Then I swallow 10-15 more supplements with a glass of water.
- You should take lumbrokinase on an empty stomach 30 min before a meal.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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One of hubby's former LLMD's thought that night sweats were babesia and day sweats were from bartonella. Have you been treated for bartonella?
If you can't stomach the cryptolepis then maybe try sida acuta and/or ivermectin.
You also should be aware that cryptolepis treats both babs and bart so if you have both that could explain why it makes you feel so toxic.
The first time hubby took the cryptolepis back in 2009 he worked his way up to 3 teaspoons 3 times per day. At that time he had both untreated babs and bart. That herb at the high doses stopped his Parkinsonian tremors and dystonia and myoclonus and even seizure-like episodes for the first time in the 8 years since he had gotten sick.
But as you indicated the supply ran out and it was at least 4 months before we could get any more and hubby could not tolerate the herb or work up to the same doses the 2nd go round.
He did take some cryptolepis at the standard dose of 1 teaspoon 3 times per day last summer and it was helpful in combo with his other babs meds. But the sida acuta and ivermectin combo added to his doxy, art, flagyl, malarone and lariam seems to have really been the most helpful thing he has done yet.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
thanks, Bea for the info. WOW, sounds like your husband's improvement on the crypto was dramatic. Altho I cannot even fathom how he got a full TABLESPOON of that down the gullet, 3 x a day!
I have tested pos. for babesia and erlichia but never Bartonella. I know that means nothing, of course.
My sweating is profuse and drenching, during the day, triggered by any exertion, or even slightly humid weather. I have been drenched even shoveling snow in 20 degree temps. I have been like this for decades, probably since my late teens.
I do remember ONE instance of night sweats during one of my herxes. Can't remember what I was on.
As a teenager (I'm now 63) I remember having what looked like purplish stretch marks on my flanks. Lasted for years I think and then faded away. I had air hunger at the time, anxiety too. Could that have been Bart?
One of my herx symptoms about a year ago was painful soles of the feet when walking. Is that bart?
I'm not sure what treats Bart, I have been on: pennicillin, biaxin, zith, ceftin, omnicef, malarone, mepron, doxy, LDN, fluconazole, alinia (worst herx ever, was asking for morphine)....
Sida acuta - what is that? Lariam? Not familiar with those.
There is no way I can do the Cryptolepis again. I'm not really a namby-pamby, this is the ONLY supp/drug that I absolutely could not tolerate. I have already given it away to another Lymie.
Please tell me more about the Ivermectin. Isn't Bart a bacteria? And is it artemesia or artemisinen? I haven't tried either yet.
-Paulie
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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