Topic: 5 yr old on artemsinin for over a year...now vomiting from it...liver damage?
tick battler
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I have been holding my breath for the last year as my three young children have been taking 3 abx plus artemsinin to combat their lyme, bart and babs...They are improving but I am constantly worried that these meds could be damaging them one way or another.
Now I hope damage has not been done...one of my boys apparently is no longer tolerating the artemisinin he has been taking for over a year! Over the past 2 weeks, he has vomited his entire breakfast shortly after taking artemisinin on three different occasions. It happened today in the parking lot of his preschool. It seems to happen on the second day of the pulse that he does weekly. I am almost positive the artemisinin is the cause of the vomiting. He also has had less of an appetite lately.
What are the signs of liver toxicity? Would vomiting be a sign? He has not been on milk thistle b/c of the Mepron he is on and I don't know what other liver support would be good for him. Can liver damage be repaired if he did damage it?
I just went to Planet Thrive and read where Buhner does not recommend artemisinin for long term and now I am even more worried. I feel terrible that I didn't research this more until now.
We just had our LLMD appt last week, so I should get his bloodwork back in about 2 weeks. I suppose that would show liver damage if there is some? What would I look for to see this?
My kids still have night sweats and are testing positive for babs, but I want to take them off artemisinin now and try something else. I am thinking of cryptolepsis but don't know which brand and dose is best for kids. Our LLMD is not much help with the herbal or alternative stuff.
Thanks for any ideas.
tickbattler
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seekhelp
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Is this Dr. J? If so, I'd ask him. It seems very odd the prescribing doc wouldn't address the issue. I'd press hard back on them for answers, including labs. I wish them the best.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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if you need a doctor/scientist whos an expert at art let me know? otherwise In my own opinion I would not take it anymore..I am not a doctor..
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Abxnomore
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I certainly understand your concerns and fears but vomiting alone is not a sign of liver damage.
Just stop the artemisim and call your doctor ASAP. His blood work may, in fact, be back by now and ask the doctor what to do. He probably tested his liver enzymes and they may give a clue and those tests don't take long to come back.
Sorry I can't offer much more help, as only your doctor will know what to do. But I don't think that vomiting, in and of itself, means he has suffered liver damage.
I took artemesia for years and had no problems but I'm not a child. Stop the it and speak to your doctor.
It's very likely that the herb is not agreeing with him. It's a very strong one and it could also be the mepron.
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tick battler
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Yes, it is him. He is very good, but I do not feel that the herbal stuff is his forte. He has never mentioned any other herbs besides artemisinin. He didn't recommend pulsing the artemisinin until after I asked him about it when I saw most were pulsing it here. My boys took it daily for months before we pulsed it. This also concerns me.
I plan to send him a fax about this tomorrow, but wanted to get help here first. The labs won't be ready for a week or two.
seekhelp
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A liver panel is ready overnight. Something is not right there. It's not a two week test. I'd push back.
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From personal experience, vomiting, lack of appetite, and fatigue can be signs of liver stress. My arteminsin bottle came with a liver warning label.
If you cant get in to see your LLMD right away, then I would go to a walk in clinic and have bilirubin (sp?) and all 3 liver enzymes checked right away just to be safe, and for your own peace of mind.
Praying that your son if feeling better.
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2roads
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I totally agree.
The support staff is used to regurgitating the two week time span because that's when Igenex WB comes back, and probably because they are so busy they 1) Don't have the time to call or 2) forget what blood work you've had.
I have dealt with this before there.
You remind them Liver function and basic metabolic testing is what you are waiting for, and that should come back no later then 72 hours. Overnight if they hunt down the results like seek said.
I don't know if liver would be the culprit of the vomittng here. I think perhaps stomach would be more related to the symptom. Perhaps it has just irritated the lining of the stomach and you need to give it a rest.
I would stop it and evaluate the vomiting. Does he complain of pain there? I would guess it is reversible but you need to not use or pulse, just call it quits for right now.
Please try not to worry. But, I think in the future these organ function tests should be run periodically. In my experience, I have found that to be needed for my son.
Maybe try some kind of child- friendly remedy to coat and soothe the tummy.
Anyone have advise for that which won't effect current meds for Babs, Lyme and Bart?
You are doing the best you can.
Try not to worry.
2roads
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tick battler
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seek - They normally like to fax me all of the test results at once since we usually have about 25 pages from several different labs (Igenex, Specialty, Quest, etc), but that's a good idea...I will ask in my fax tomorrow to see if that part is completed.
At our appointment last week, the issue was not really discussed, since I had not yet tied the vomiting to the artemisinin. My son had only vomited recently on one occasion and when I mentioned it, our LLMD didn't think one time was anything to worry about.
Thank you Abxnomore- It helps to hear that. I hope it's just a sign that the herb it not agreeing with him and nothing more than that.
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Abxnomore
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I think everyone should remove the doctor's initials. It's not necessary to this conversation and we all need to protect our LLMD's. It's very clear to almost anyone who this doctor is.
As everyone else has confirmed, liver testing comes back ASAP, unlike lyme testing, so I'm sure the office will have those results and I'm sure they will help you about what to do.
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tick battler
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Polar - yes - I would love to hear the name of your naturopath or whomever you recommend. If anyone else has a good recommendation for a good naturopath to use along with my LLMD, I would love that too.
Morningsong - that you...I will ask for those specific results tomorrow.
2roads- thanks for the kind words. Maybe you are right about his tummy being irritated...he did have stomach pain tonight at dinner. It gradually went away as the night wore on.
I am definitely not giving him any more artemisinin after this morning's episode. Now I'm looking into cryptolepsis.
Thanks again all,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Chances are that if the liver enzymes were elevated, the doc would have called.
Just because they like to keep the tests and get them all back to you in a group, does not mean that the doc has not seen them. Usually the doc has a glance right away, and if anything is serious they will call, if not they wait to talk about everything. This has been my experience with a few LLMDs.
I wish you the best.
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Abxnomore
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nomoremuscles You are right. That is what all doctor's offices do. They look at all testing when it comes in. If something stands out that is of urgency, they contact you. If not, it waits until your are scheduled to discuss it.
I wouldn't start him on cryptolepsis now. Let things settle down first, see what's going on if anything and then discuss it with your LLMD.
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tick battler
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muscles and abx - I hope you are right that they would have called if something was elevated. I guess I will find out tomorrow.
I'm just researching the crypto at this point and definitely do plan to discuss it with the LLMD, but would like to consult with someone more experienced in this area.
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Keebler
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- The only source of Cryptolepsis that I'm aware of is a tincture, but if you can possibly find it, it can come in capsules and tea. It is incredibly hard to find with just two places in the country carrying it and they are often out of it. The only form I can find is tincture.
I'm not sure the alcohol tincture of cryptolepsis would be suitable for a child. Even a tiny amount of the alcohol as used in a tincture could stress the liver.
As for artemsinin, it does use the Cytochrome P-450 liver detox pathway which is stressed in most lyme patients, anyway. Generally, it is a very safe medicine, used around the world for malaria. I spent quite some time studying this a couple years ago and all the research I found was very credible and pointed to its safety. (There was just one author from many who had a problem with it but the form he highlighted is not the same form as artemisinin itself and his work had been taken out of context.)
Still, perhaps, in the dose of the pulses, it just could be too much for your son. If the liver enzymes are high, there would be no way to know exactly which medicine, supplement, or infection might be causing the added stress.
But, sometimes, our stomachs and livers just need break from the meds. I hope you can find some liver support, though.
I cannot tolerate artemisinin due to having two kinds of genetic porphyria. However, if I take special measures to control the porphyria with beta carotene, I can handle it for short times.
If someone has porphyria - of any type or to any degee - alcohol will also be very hard on them, even just that from a tincture such as with cryptolepsis.
There are some ways to let the alcohol dissipate. Cryptolepsis tincture uses the root, so hot water could be added to that, and swirled around a bit in a shallow dish.
Even with that, the alcohol still may be too much for a child. I know one LLMD who also treats liver disease patients and insists that no one uses tincture preserved with alcohol.
There are some glycerin-based tinctures but cryptolepisis not in that category. You might be able to contact Buhner, the author who mentions cryptolepsis (but not in the lyme book). It's in another book of his "Herbal Antibiotics" page 25-26 and it does show that it can come in capsule form and as a tea. It's just that I'm not sure where to get those and the book does not discuss doses for children.
No abstracts were found when cross searched with ``child'' or ``children''
================
The vomiting could be from stomach irritation but since you asked about liver, just about everything we consume puts a strain on the liver if it is overwhelmed. The medicines used with lyme treatment can stress the liver. However, the infection(s) can damage the liver and the infections must be treated.
Oh, by the way, just in case your son takes tylenol, that can raise liver enzymes and also be hard on the liver, even in normal doses - for some patients.
If he cannot take milk thistle because of the mepron, is there some other liver support that can be used that would not lessen the therapeutic level of mepron.
----------
One reason that many doctors don't suggest supplements is that they have enough trouble as it is treating lyme, with all the pressures from the IDSA. Supplements do not have the respect that I think they deserve but if a doctor suggests them, those who don't like the doctor are very quick to criticize, saying that the doctor is not practicing "real" medicine.
So, as the even the LymeMD blog doctor has explained for himself, he sticks only to pharmaceuticals so as to avoid criticism from those who'd even say vitamins are not "real" medicine. Your son's doctor may have similar reasons for not suggesting support supplements.
--
But, going back to what can help the liver --- carrot juice would be the very best. It helps keep excess porphyrins down that are a result of the stress on the C P-450 pathway. Beta carotene in other forms, too . . . like greens powder mixed with water.
In addition to your son's LLMD who is excellent - but no one can do it all - it might be good to complement treatment with a LL ND (naturopathic doctor) who is also an ILADS member so they know all about lyme/TBD and the pharmacological basis of treatment - and then how to support that.
I'll come back with a few links on other ways for liver support but know that these are not intended for children unless under the guidance of a ND or L.Ac. (acupuncturist). I would have no idea, specifically, what would be intended for a child.
-- Sorry that I cannot be concise in my posts. That is why I mostly just copy and paste links. Actually trying to verbalize my thoughts is very hard, so please forgive me taking forever to do so.
I do hope this gets better for all of you soon. In the meantime, a gruel of Slippery Elm has really helped my stomach settle down to be able to accept certain meds again. -
[ 10-14-2009, 03:25 AM: Message edited by: Keebler ]
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Keebler
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- LIVER LINKS
Here is a set of links I've collected over time. There may be some helpful information here:
. . . Individual variations in our cytochrome P40 enzymes help to demystify why there are so many variations in how we respond to drugs and herbs. . . .
The important thing to remember is that the liver is a hot (metabolically active) organ, and so tends to get congested and inflamed.
. . .
Protection
Turmeric root, wheat sprouts, schisandra berries, amla fruit, beet root and milk thistle seed are among the major sources of protective anti-oxidants for the liver cells, as are fruits that contain flavonoids, especially citrus fruits.
These should be used to prevent development of inflammatory disease, or for damage protection as in the case of persons taking strong chemical drugs or undergoing chemotherapy.
Deficiency
The liver can become weakened and deficient. If this is not corrected, it can lead to liver atrophy and depletion of glycogen stores, even hepatitis. Signs include fatigue, low blood pressure, hypoglycemia, dry eyes, headache, heat symptoms and irritability . . . .
Heat and Inflammation
To remove excess liver inflammation with heat signs or toxins . . . .
. . .
Pain
If there is liver inflammation with signs of pain and tension, use herbs that calm the liver and move the blood . . . .
If milk thistle is not on your plan, NAC might be considered:
This, from a protocol for Chlamydia Pneumonia (Cpn) which is a similar chronic stealth infection. This treatment protocol is also similar to that of chronic lyme.
This is what one of the protocol authors says about the power of NAC to help protet the liver:
. . . "Surprisingly, the only anti-chlamydial agent that did not cause hepatitis in some patients was NAC. In fact, NAC is recognized as being protective.
See attached references.
My conclusion is that NAC should be the first agent in an anti-chlamydial regimen and should be a constant part of the therapy for this protective effect, not to mention it's effect against elementary bodies.
This includes details on kryptopyrroluria (KPU), one type of porphyria that one LLMD says affects every lyme patient.
Be sure to look at the secondary porphyria posts early in the thread and also the last several posts for those on Kryptopyrroluria and Dr. K's KPU protocol.
==========================
METHYLATION ?
From TerryK, this is a very important consideration for some patients and the way their liver can metabolize:
In addition to information Terry has posted there, she says:
There is a page on lymeinfo.net about methylation but it just covers the theory behind the simplified protocol and not really methylation cycle issues in general.
[ 10-14-2009, 03:23 AM: Message edited by: Keebler ]
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tick battler
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Thank you so much Keebler - you have such great information. I will read this in more detail later today. I like the carrot juice idea.
Momfromtexas - what is NAC and where do you get it? Is this what your kids take?
Thanks,
tickbattler
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Keebler
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- NAC (N-Acetyl-Cysteine) - some description of it is buried in all the stuff I dumped above (that would take anyone a week to sort through). I don't know about a child's dose with any of this but NAC is one of the best liver protectors. -
I wonder if, by chance, your son might have been taking B-vitamins with a light breakfast on these mornings, maybe from a shift in routine or a new brand of vitamin? The B's make me vomit a while later if I've not taken them in the middle of a at least a medium sized meal. -
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tick battler
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Thanks Keebler...unfortunately I can't tie it to a vitamin or change in protocol. But three times now I can tie it to the second day on artemisinin. At first I thought perhaps he had too much to eat the first time. But the second time he didn't have much and got sick. I am almost positive that it is the artemisinin.
Thanks for the NAC info.
tickbattler
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Keebler
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- Sometimes, something just stops working for us and we have to move on to an alternate.
Hope he feels better soon.
about the NAC, I'd wait until his tummy is calm, be sure you have advice for pediatric use and dose and begin in the middle of a meal. This can cause some upset for some people. I had to start it with food but can now take it on a empty stomach. -
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seekhelp
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Keebler, GiGi has said many times NAC is very dangerous for us. What do you think about her ideas there?
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tick battler
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Thank you all for your support and comments. I did hear back from our LLMD and thankfully the bloodwork is fine. We are stopping the artemisinin and I am looking into trying cryptolepsis, but still researching that.
Best,
tickbattler
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Keebler
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- Seek,
From what I've read and studies, for myself, I think I need NAC and it continues to be on the list of one of the most important liver protectors.
Since I also have chronic Cpn (Chlamydia pneumonia), this is required for me. The Cpn protocol insists on this (even if I have to use alternate for other parts of tx).
It is also required for me due to porphyria and also since my ears have been damaged, I cannot afford any more damage. NAC helps with my ear protection.
Still, there are some considerations with it. I would not expect anyone to just run with it but do more personal research and then talk with their LLMD.
Seekhelp,
Would you please post the details? I would like to see more specifically the information from GiGi to which you refer. It's important for me to read it in the original context - with links - if there are some.
It's always good to share details behind the statement.
A patient-tailored N-acetylcysteine protocol for acute acetaminophen intoxication. -
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NAC is supposedly not a good idea if one has mercury issues. Otherwise I have never seen any negative issues with that supplement. And not all docs agree that it is counterindicated with mercury issues.
Tickbattler,
One part of the liver panel that many docs do not order is GGT. That is more a longterm measure of liver status -- if elevated it generally indicates a fatty liver. May not be an issue with children, but then again both Lyme and babs rob choline which is needed for the liver to function properly.
And the regular liver enzymes can be normal but the GGT can be elevated.
Don't know what if any meds your kids are taking for bart, but hubby has more frequent vomiting when his bart or mycoplasma or whatever it is is acting up.
Bea Seibert
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Shosty
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I'm sorry, but 3 antibiotics plus artemisinin is a lot for young tummies. You are obviously aware of this, because you have been worrying about it.
Along with identifying the artemisinin as an immediate cause for vomiting, I would think about less acute, but equally important long term gut health issues, that could also be contributing to the situation.
Yeast, alterations in the gut bacteria balance, effects on the immune system, leaky gut and food allergies, malabsorption: all these issues arise with long-term antibiotic use (even with just ONE), not to mention c-difficile and other infections.
I caution you that when you go to a mainstream doctor, or hospital, and they see your son having GI or any other side effects from this protocol, you are at risk for being investigated by CPS, and the LLMD is also at risk for further trouble than he already has.
I don't say this to scare you, but to protect you. You need to be very careful.
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