Topic: Is any of this a typical reaction to Artemisinin?
trueblue
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I finally beginning to treat the long stand b. microti that I tested low positive for in 1998.
I have had a lot of Babs symptoms, especially recently, and have finally found an LLMD willing to treat me. Phew!
I am to be taking Malarone, Atemesinin and add in Ketek after 7-10 days. As I haven't got the Malerone, yet, probably next week, I have started on the low dose prescribed of Artemsiminin. I am extremely hypersensitive to meds and also have Hep C.
I'm wondering if what I'm esperiencing is typical for just being on Artemisinin.
Nausea, chills, sweats, feeling like I wasn't breathing right although my lungs are filling up, Light headedness, whooziness on standing up, extreme tiredness(sleepiness).
Yesterday, along about the forth day, I had a massive temple and back of neck headache with stiffness. (with light sensitivity) Head and upper body(especially chest)buzzing, still with nausea and increased episodes or breathing stuff. The headache lessened with the onset of a low grade fever at night.
I slept 9 1/2 hours last night and still was exhausted and that headache morphed into a mild migraine which resolved into spine pain radited through my body, I took an advil and a 2 hour nap and felt better except for he lightheadedness when attempting to stand and a constand feeling of my breathing and chest feeling weird like internal humming and over all anxious feeling and shakyness. Eating is very difficult and the nausea persists.
Does any of this sound like it's typical as a response to begining Artemisinin?
I'm also wondering if I'm stirring anything else as well.
While a bit disconcerting none of these things are severe enough to warrant genuine concern except for that bizarre headache, which is much less severe now.
Any advise to the Babs treatment virgin greatly accepted.
Thanks in advance for any input or opinions, just trying to get comfortable with this before I start the Malarone.
The flucuations of BP and pulse concern me somehwat and I believe add to the feeling whoozy when standing.
Sorry this is so long and scattered I may just read it tomorrow and either delete it or make it into something sensible.
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groovy2
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Hi True
Sounds like you are have a small herx-Art will do this-
Its a good sign--
Babs is one Tuff bug-- Kicked my butt big time --
It is Very Important that you have a steady supply of meds--dont start and stop-ect--
Babs take a very long time to get over- with steady treatment --
I have to take Art seperate time(hour) from other meds or I barf-- so keep in mind--Jay--
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posted
Sorry to get off topic, but if you have hep c are you on Alinia? It's being fast tracked by the fda because it showed so much promise in trials. Some are touting it as the biggest gun in the antiviral arsenal.
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trueblue
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quote:Originally posted by groovy2: Hi True
Sounds like you are have a small herx-Art will do this-
Its a good sign--
Babs is one Tuff bug-- Kicked my butt big time --
It is Very Important that you have a steady supply of meds--dont start and stop-ect--
Babs take a very long time to get over- with steady treatment --
I have to take Art seperate time(hour) from other meds or I barf-- so keep in mind--Jay--
Hi Jay, It sounds like a small dose = a small herx (which is just as well).
I've been reading everyone's posts and will keep things steady.
I probably have this for 25 years untreated. I'm glad the doc decided to start small.
I don't know what adding the small dose of Malarone will be like. I guess I'll find out soon enough. (Holding on for when the butt kicking really starts. )
I am taking the Artemesinin at bedtime and on waking so there's nothing else in my stomach.
Thanks, true
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trueblue
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quote:Originally posted by dtiffen02: Sorry to get off topic, but if you have hep c are you on Alinia? It's being fast tracked by the fda because it showed so much promise in trials. Some are touting it as the biggest gun in the antiviral arsenal.
That's ok, dtiffen, No, I'm not on anything for the HepC. It's at a fairly low level and doesn't appear to be attacking my liver.
I was waiting until they came out with a treatment that was considerably less toxic than Interferon w/ Rebitrol(sp?). Very toxic and nasty and doesn't work the majority of the time. Very few people clear the virus, especially with genotypes 1a or 1b; 2s and 3s get a better response.
I'll keep an eye on the Alinia and see how it goes but am in no hurry to try anything; let them work out the kinks first. I also don't trust the FDA much so think I'll wait to hear something from real people.
Have you, or do you know, anyone that's tried it?
Thanks, trueblue
ps. I am 1b.
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Aniek
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I remember a really bad headache when starting Artemisinin. It also increased light-headedness and vertigo, which are babs symptoms.
Most of your symptoms sound like babesia. So it sure sounds like a herx to me.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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trueblue
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Thanks Aniek ~ I'm actually surprised; I can't imagine what my load must be to be reacting to this small a dose (about 1/3 of what most people start with).
I also wanted to make sure I wasn't completely loopy and this was all something else.
(Ok, I may be completely loopy but am having an increase in Babs symptoms.)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Sounds like a huge herx to me! Every single symptom you mentioned is what I experienced with babs treatment....BP fluctuations and wooziness included.
Take it easy and don't overdo the meds!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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trueblue
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quote:Originally posted by Lymetoo:
Sounds like a huge herx to me! Every single symptom you mentioned is what I experienced with babs treatment....BP fluctuations and wooziness included.
Take it easy and don't overdo the meds!!!!
Yikes! It's not too huge, yet, but that's on only 100mg of Artemesinin twice a day.
I'm in big trouble aren't I?
Thanks Tootsie, I'll proceed with caution.
I kind of worried about what will happen on adding the malarone and then a week or 2 later... ketek.
*trueblue takes a deep unsatisfying breath*
(Gonna go lay down while I can. I only have 2 days until mom gets home from her hip replacement. I still have to drag myself over to the hospital today and try to eat.)
Sorry for the whine, maybe I don't feel so good.
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posted
Sounds like the treatment is working.Exactly the kinds I experienced on treating w mepron-Zithro. Hang tough. It may be not so fun for a while...but ultimately its worth it!!!
Pomegranite
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trueblue
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Thanks Pomegranite!
This is all really new to me. (like what it says when you're waiting for the post preview to come up... Unknown Zone)
really gonna lay down, now, really.
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JimBoB
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YOUR symptoms sound almost exactly what I have been experiencing the past three days, and getting stronger.
HOWEVER, it is STRONGLY recommended NOT to stay STEADY on Artemisinin, UNLESS of course you are on the very lowest dosage of it.
I pulse it to be sure. BUT I am not on the lowest dosage either, anymore.
I am not even on the extract Artemisinin anymore. I am using the whole herb now, Artemisia annua which the Artemisinin is take from. As it has OTHER good attributes for Lyme AND it appears in testing to do a better job with Malaria and Babs. However it is more diffictult to get because there is not the money in it for the drug companies.
I take 600mg a day now for three weeks then off for two weeks. However, I didn't realize how time slipped away this round, and it is almost three weeks off, so started it again this morning. However I also started a NEW to me herb, called COPTIS, so COULD be herxing from that too. NOT sure since many of Lyme symptoms are the same as Babs. I have no chills/sweats right now.
WHY are you considering KETEK? I wonder especially since you say you are so sensitive to medications, and it has even killed some people. I sure wouldn't touch THAT one personally. JMHO.
trails
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I have very similar reaction/symptoms/herx to babs treatment as you describe minus the migrain and the breathing.
When I take babs fighting meds I get babs symptoms. When I dont take babs drugs I dont have symptoms. I guess it is kicking it up. I have never been able to really tell.
I have never been able to stay steady but for 3 months of mepron/zith. THat was the longest I went.
Hope you can get some rest today. Trails
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trueblue
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Thanks Trails, I did get a little nap which helps enormously.
I have been having Babs symtoms (on and off for years) but mostly on for the past few months and increasing.
I was a little surprised the low dose brought out so many so fast. However, I seem to be waking up drenched, less, actually.
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posted
My LLNP said that generally babs treatment goes one of two distinct ways -- either you herx your head off and the symptoms flare like crazy, or you feel better almost immediately. (Thank goodness I am in the latter category!) So sorry for your pain-- babs sucks!
The headache that radiates down to spine pain could also be something along the lines of meningitis -- (it can present as really acute, or more subtly) -- this is actually really common with Lyme. Maybe talk to your LLMD about that? I'm a big beliver in adequate pain relief, too -- my NP is great about helping with my pain management -- I needed lots of it at first, though I can often go without any at the moment.
Hope you feel better soon!!! Lots of rest, lots of detox!!
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trueblue
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Thanks Mini, I'm still hoping for symptoms flare and then resolve. I'm less sweaty but more other stuff. Who knows? (I also have the A/C way down so am more apt to have chills and the sweats are less.) It's ok if this winds up going the hard way, I can do it and it sure will be great to gain some ground after 9 years of mistreatment; I'm actually excited at the prospect.
I will mention the headache/spine pain... since this is a new LLMD; so maybe there's an answer there. My last doc just wrote things down and didn't give me anything to help. I'm pretty sure I'm in a better place now.
I believe in adequate pain relief but find it's often unattainable. I have a lot of paradoxical readtions to meds so genereally keep it to an occassional advil or plain Darvon. Anything stronger and I turn into Richocet Rabbit.
What do you recommend for detox? Something simple? I've only been drinking lemon water and decaf green tea.
And thanks for the support, all!
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trueblue
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I'm doing slightly better today but still can't shake the shaky inside, funny breathing, waves of nausea and whooziness thing.
The headache is way less and the spine thing stopped (I really hate that one!)
Lots of buzzing, humming and trembling in abdomen, head and chest.
Ha, some fun, no?
I'm sorry I'm even writing this stuff but this whole Babs treatment thing is very new and completely different for me.
I feel like I want to talk to people that have done it to make sure it's really real and to know that eventually it'll get better even though it will get much worse prior to that.
(I'm sure babbling even more is a Babs symtom, hence the name?)
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charlie
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....Just ramp up sloooow...on day 4 or 5 my leg muscles had big knots and lumps in them to the point I couldn't walk. Who cares if it's a herx or not?? Sure feels like one...
Charlie
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trueblue
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Yeah, it does... a very different type of one.
Thanks Charlie (for everything)
I'm going as sloooow as humanly possible, I'm sure.
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posted
These are all the symptoms I'm having now and I'm not on babesia meds yet but I'm starting them soon. Those symptoms are what caused Dr. S to put me back on mepron. Boo Hoo. Sounds like a babesia herx. All the symptoms I have are nausea, fatigue, dizzy, chills, fever, heart palpitations, vision problems, upset GI, heavy legs, and air hunger(feels like breating through water and not getting enough air but the lungs are expanding).
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trueblue
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Those were most of the ones I'd been having for a long time too, surg.
It just took until now with a positive test in '98 to find someone willing to treat. (Until about a year ago I didn't know what those symptoms were.)
I'm sorry you have to go there, again; I hope it goes better than you're expecting. This is my first shot and hopefully a key to what held me back for so long.
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JimBoB
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Those are pretty much the SAME symptoms I have been having this past week also. HOWEVER, they STARTED BEFORE I started on the Artemisia annua again. About two days before. And they are continuing.
BUT listen to this: I read last night that most of these symptoms are the SAME symptoms as for West Nile Disease. Have you been bitten by a mosquito recently? I HAVE, so now I wonder?!?!
IF I am not better by Monday, I think I will make an appointment with my duck and see IF I can get a test for that?
posted
Here is a small portion of what I read. It is from the New York Times. I can post the whole article IF you like.
Jim ###
Quote: Four out of five people who get West Nile virus have no symptoms. The other 20 percent have a fever, headache and fatigue. Sometimes, they get a rash and swollen glands. Less than 1 percent get severe complications like neck stiffness, stupor, convulsions or paralysis.
trueblue
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JimBob, I am sorry to hear that you have some similar symptoms.
However, you may not have understood my original question (and I know it might have been muddy) I was asking whether these symptoms were typical of an Arteseminin experience.
I did not ask for treatment suggestions or opinions on what my Dr and I decided. Please refrain from questioning my choices; they are mine to make.
In addition, can you PLEASE remove(edit out) the West Nile information from this thread. If you'd like to talk about West Nile start a thread of about it.
Thank you I do hope you find answers that work for you.
Please pardon my curtness, today, there's too much going on for me to manage any more tactful ATM.
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JimBoB
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Hi TrueBlue:
Yes, I think maybe you are right in that it was a little muddy so that along with your continual mispelling of Artemisinin threw my thinking off. (I was a proofreader and printer for many years and spelling or I should say mispelling still throws me off, even with the neuro I have been experiencing this past week too).
Also you were wondering if anything else could be causing it IF I remember right. That is what triggered my response on West Nile. AND I DID start a thread on that wondering IF it is Babs or West Nile, since without testing it is hard to tell.
trueblue
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hmmm... I think that misspell is spelled wrong, lol, from one printer/proof reader to another, cheers! Wanna call it even?
I'm pulling this back up becaue I'm wonderin if this is normal for it to be coming around again so fast. Still on the same dose but have been running a fever about 100 at night and an increase in weird vertigo, air hunger, chills, nausea, lots of weird stuff...etc
Any one know if this sounds right and/or what will happen when I start the Malarone toward the end of the week? I should be about 4-5 days in by the full moon. Eep! I'm just wondering what to expect from others; prior experience.
Thank you, sorry to be pesty, but this is totally new territory for me.
Thanks for your patience and input. trueblue
(I think it's 16 days since starting and 11 or 12 from it's peak.)
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JimBoB
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Truce is in order here.
So YOU were in the printing business also?
By the way, MY symptoms came about because I started taking COPTIS along with my other herbs, because I listened to a couple on this board who took it and reported good things about it.
Don't get me wrong, Coptis is an excellent herb, you just have to be super cautious taking it with other herbs. And I wasn't. I WAS also taking Artemisia annua starting about the 2nd day of the Coptis. I have stopped BOTH herbs now, until I find out more about what is Hot and What is Cold in the herb families. So I am taking the right TYPES of herbs altogether.
The symptoms you are having are very similar to the ones I'm experiencing and I just started my 4th month of Mepron/Zith/Art.
My symptoms include: -Night sweats -Palps -Dizzyness -Chest/Abdominal pain & tightness (When I'm in a sititng position my abdominal muscles feel stiff and not part of me) -Spinal/back pain, between the shoulder blades (I read somewhere that babs tend to migrate to the spinal column) -Shakyness in the hands/jaw/head -Leg/hand numbness/tingles/twitches/tremors/jerks -Ringing in ears -GI problems -Air hunger (like I can't expand my diaphragm) -Respiratory area feels really fragile
I have a very severe case of babs with a positive test. I believe I have had it for at least 5 years. For the past several years, I've been having night sweats never knowing what was causing it. I ignored it, thinking it was nothing serious...turned out to be babs when things got really bad this past winter with what i thought was a sore throat and I never got better.
Babs takes a while to treat. I would imagine that since you've been positive since 98, you may need to treat longer.
Best Wishes!
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trueblue
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I am glad you've found the problem and are feeling better, JimBob.
And, yup, lots of years in graphics. Printing, Signmaking, Silkscreeen... kind of soup to nuts; artwork to delivery. I was an awesome 4 color-stripper. All of it before computers (pretty much a dead art at this point).
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trueblue
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quote:Originally posted by jwenny: Hey True,
The symptoms you are having are very similar to the ones I'm experiencing and I just started my 4th month of Mepron/Zith/Art.
My symptoms include: -Night sweats -Palps -Dizzyness -Chest/Abdominal pain & tightness (When I'm in a sititng position my abdominal muscles feel stiff and not part of me) -Spinal/back pain, between the shoulder blades (I read somewhere that babs tend to migrate to the spinal column) -Shakyness in the hands/jaw/head -Leg/hand numbness/tingles/twitches/tremors/jerks -Ringing in ears -GI problems -Air hunger (like I can't expand my diaphragm) -Respiratory area feels really fragile
I have a very severe case of babs with a positive test. I believe I have had it for at least 5 years. For the past several years, I've been having night sweats never knowing what was causing it. I ignored it, thinking it was nothing serious...turned out to be babs when things got really bad this past winter with what i thought was a sore throat and I never got better.
Babs takes a while to treat. I would imagine that since you've been positive since 98, you may need to treat longer.
Best Wishes!
Thanks jwenny, I'm a little freaked out by all this. I have all those but the air hunger and resperatory isn't too bad.
I only tested mildly positive that one time in 98. (probably had it 20+ years like the Lyme but assumed it was a low level thing)
Apparently, I was wrong on that part. I can't believe that just this small amount of Artemisinin is doing all this to me.
Since yesterday afternoon... I have more fever, increased vertigo, chills and sweats, headache and today my lymph glands hurt in addition to my chest, back and right ankle. I don't know what I'm supposed to do but all of a sudden adding the Malarone doesn't sound like much fun. I'm afraid of what will happen.
I think I'll call the doctor tomorrow.
*sigh*
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JimBoB
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quote:Originally posted by trueblue: I am glad you've found the problem and are feeling better, JimBob.
And, yup, lots of years in graphics. Printing, Signmaking, Silkscreeen... kind of soup to nuts; artwork to delivery. I was an awesome 4 color-stripper. All of it before computers (pretty much a dead art at this point).
Thanks, it sure is no fun to be that sick. As I am sure you can attest to also.
Tell me about dead arts. All the photography and artwork I learned and did for many of my 40 years in photography are pretty much a dead art today. I am into digital and computers now myself, but also mostly retired now.
Prior to that I was in the printing business, since way back in the 50's up through the early 70's. I did mostly letter press, linotype operator, page and adv compositor, ran the big presses, etc., etc.. But all that went the way of offset, which I did very little of, got into portrait photography about that time.
Progress I guess they call it.
Take care of yourself too, and hope you get a handle on it soon. I know the feeling and THAT ain't fun.
posted
Most of theseare probably a result of babesia itself. Yes, there is a sort of a "herx" when startng artimesia, but I believe the mechanism behind it is different from that which causes the "herx" from treating Lyme.- I think it is more of a toxic reactioun to the artimisinin itself. For me it only was noticeable for a few days, and my doc had me start out on half the dose; that also minimized the problem. After that first week I had steady and rapid improvement, especially after I started atovaquone ('malarone'). You might think about also taking large amounts of garlic- it compliments the artimisinin substantially! DaveS
[QUOTE]Originally posted by trueblue: [QB] I finally beginning to treat the long stand b. microti that I tested low positive for in 1998.
I have had a lot of Babs symptoms, especially recently, and have finally found an LLMD willing to treat me. Phew!
I am to be taking Malarone, Atemesinin and add in Ketek after 7-10 days. As I haven't got the Malerone, yet, probably next week, I have started on the low dose prescribed of Artemsiminin. I am extremely hypersensitive to meds and also have Hep C.
I'm wondering if what I'm esperiencing is typical for just being on Artemisinin.
Nausea, chills, sweats, feeling like I wasn't breathing right although my lungs are filling up, Light headedness, whooziness on standing up, extreme tiredness(sleepiness).
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trueblue
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Thanks JB.
And TooToo, thank you for telling me this sounds like I'm on the right track... that means a lot from the Babs maven.
Dave, someone else also suggested starting the Malarone soon might help. I am gonna call in the morning and leave a message for the doc and make sure I'm doing this right.
I think I was supposed to start the Artemisinin together with the Malarone but couldn't get any until later this week. The doc's staff seemed to think it was ok.
I too started on a small dose to minimize the effects and my Malarone dose is probaly also to be low to start. I like my new doc and he seems to agree to go easy on me.
I can do this. I am very pleased to be finally doing something about it, although, it's uncharted territory for me. Hence, all the panicky silly questions.
I feel considerably beter than earlier, I took some digestine enzymes and drank some decaf green tea and it seems to have helped dump some of the toxins.
Thank you all for taking the time an energy to post. I do appreciate the advice and support.
trueblue
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