nefferdun
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posted
I was very nervous about taking this drug. In fact I warned everyone I would probably be in bed for a week. I worried about whether to take it for 3 days or stretch it out to seven and finally decided to do the three. Kind of like holding my breath to jump in cold water. I was excited it might help but really apprehensive.
The first dose was 8:30 this morning. I sat waiting for it to knock me out. Nothing. Then I noticed I felt pretty good so I dared to go to the grocery store before it hit me. Before long it was afternoon and I was still feeling great.
Here is is early evening and I have not felt this good in many months. I have energy, motivation with upbeat and happy attitude. I chopped out an entire dead bush. It was gigantic and I can't believe I did it.
I hope I don't crash later.
-------------------- 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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seekhelp
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posted
I'm happy to hear you're doing well, but beware this drug hits you like a damn ton of bricks day 2-3. It lasts 10 days at least. it can be brutal. My heart was pounding and more. Blood pressure skyrocketed. Don't underestimate it.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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BoxerMom
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posted
nefferdun - please keep us posted on your progress.
I am trying Tindamax and Malarone this round. Lots of herxing, but feeling very good between herxes. I plan to add Mepron and Zith, if I can.
nefferdun
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posted
Thank you for the warning seek. It is morning, the second day and I still feel ok although a slight twinge of a headache. Imitrex is one of the drugs you can't take with Coartem so I hope this goes away. My headaches can be brutal.
Coartem can cause a pounding heart which is what happened to you. When taken with other drugs with the same side effect (like zithromax), it can kill you. I quit the zithro 4 days before starting this. It does not interact with Malarone so I quit that one day before.
BoxerMom, I will keep you updated. This is the most improvement I have ever had in one day. This disease always gets my hope up thought - and then I crash again.
People say they feel much better and then their improvement is quickly lost. I don't know if they did not continue another treatment or what happened.
-------------------- 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
PS I forgot to ask why are you taking tindamax with Malarone? I thought you were supposed to take a macrolide.
-------------------- 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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tdtid
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posted
My LLMD did not allow ANY other medication while taking Coartem. I did four rounds with Mepron/Zith in between after breaks on each end before changing meds.
I'm sure every doctor does things differently since I know that mine had my rounds longer than some people.
Also, with four different rounds, I reponded totally different each time, so it's a hard drug to predict. Please continue to keep us posted.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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nefferdun
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It is day three and if I did not know better I would say I am well. Of course I can't remember what well is like so there is a "new normal" and I can easily ignore lingering symptoms.
But I feel good. I am not depressed. I am not dizzy. I believe I had one very mild hot flash last night. No headaches. I have more energy - although climbing a flight of stairs still makes me gasp for air (just not as bad).
This is the last day of Coartem. I am going to start Malarone tomorrow. It does not react with Coartem. They just recommend that you not take two anti-malarial drugs at once. In four days I will start zithro again. I do not want to give this infection a chance to get going again.
My plan is to do another round of Coartem in 3-4 weeks. When I feel symptom free for a month I will do chloroquine/primaquine as a final cleanse. I am probably being way to optimistic.
Then onto the Ehrlichia and what is left of Bb.
I will post again if there is a big herx or a major relapse. Please keep your fingers crossed.
-------------------- 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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Amanda
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Why is it a problem to take coartem with zith? I ask because I am doing Coartem (with LArium) and IV azithromyacin.....
I see one of the "better" LLMDs, and they didn't mention anything about a problem...
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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sammy
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posted
Both Coartem and Zithromax can cause a prolonged QT interval (heart arrhythmia). It is generally recommended that you do not take them together. (See package insert for Coartem)
Some people with prolonged QT interval have no symptoms. In others it can cause fainting, seizures, and rarely sudden death.
Some people are genetically prone to having a long QT interval. You wouldn't know this unless you had an EKG. These people should be careful with taking certain medicines.
Amanda, if you are going to be on these 2 medicines for awhile, you may want to ask your doctor about ordering an EKG to monitor your heart every now and then. Just to be safe.
I don't say any of this to scare you, just to inform you.
Posts: 5237 | From here | Registered: Nov 2007
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canefan17
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posted
Delayed herxes were very common for me with antibiotics.
Mine usually hit on day 4
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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nefferdun
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posted
I have been warned about the delayed herx. I will probably be eating my words in a few days. Very confident now but that will probably soon end as that is what this disease loves to do to us. It only allows us to stand so it can knock us down again.
I am just enjoying this new version of "feeling good". The last time I posted about how good I felt, I could stand up and walk around. I did a little painting and I could think a complete sentence. It was a great 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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BoxerMom
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sammy
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posted
nefferdun, I also felt better on Coartem. I did a course of it every other week last summer. Followed up with Malarone.
It did not cure me but it did help me feel better while I was on it and for 2-3 days after.
Posts: 5237 | From here | Registered: Nov 2007
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i have a 9 day package which im going to use next month when i have some holidays. i hope this stuff will help me too.. hope it wont know u out next days
Posts: 371 | From velocity of light | Registered: Sep 2009
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posted
I agree with seek. I did 2 7 days rounds. The first round I had 3 days of almost normal. So I asked for a second round of 7 days. I was combining it with rifampin and doxy. The second round hit me on day 14 and it was the worst herx I have ever had. Enough to stop everything for the first time ever, and then it took awhile to calm down but, my dizzy ear thing,off balance, head not attached feeling (knock on wood) had been gone since then for the first time ever too. Part of coartem stays in your system for 4/6 days after you stop taking it. Would I do it again. Yes Not sure why my llmd said only 2 rounds. Anyone know?
Posts: 433 | From new york | Registered: Dec 2004
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nefferdun
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I am still fine, the day after. I started the Malarone this morning. I hope not allowing anti-malarial meds to completely drop in my blood will help protect me from what many of you experienced.
Did you continue taking anti-malarial drugs after Coartem? Did you start the drugs immediately after your last does of Coartem or did you wait 3-4 days? That might be the problem. It would be a good thing to figure out.
When I used the bad Mepron from Canada I relapsed very quickly. It was confusing as to what was happening and many on here thought it was a herx. It wasn't. When you quit drugs (or take something that is no good) and are still infected, the babesia comes back very quickly.
Coartem does not cure babesia in one dose. You need to continue treatment. Using Coartem once a month will not keep babesia in check. It multiplies too quickly for that.
-------------------- 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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sammy
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posted
I always restarted Malarone the day after finishing Coartem.
Maybe I need to be on a higher dose of Malarone? Who knows. This is one stubborn infection.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I have relapsed 3 times on Mepron, Malarone, zith, and Septra, and Coartem. I found on Dr. K's website a protocol for Babesia. 500 mgs of Artemesinin 3x a day with grapefruit juice, for 2 days a week, 3 weeks on 1 off. It's for one year. Been doing it now for 3 weeks, I think it might be working.
Posts: 845 | From Northeast | Registered: May 2011
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nefferdun
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That is an interesting protocol RC1. I might try drinking grapefruit juice when I take the artemesinin. Maybe it causes the art to be more concentrated.
I was a little tipsy after taking the malarone this morning which worried me but as the day went on I was fine. I sure hope I am getting better.
-------------------- 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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annxyzz
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posted
RC1, Do you take a total of 1500 mg on this babs protocol ( art ) ? What do you do on other days of the week ? I would like to know more as I do not have a doc and must be on a "save yourself " protocol. Is there a place where we can see this protocol online ? Thanks for sharing !
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
Annxyzz, Gigi posted a link to Dr. K's website so if you look up her posts you would find it there.
I would find it and post it for you if I only knew how, I never did much with the computer until I got sick.
The grapefruit juice makes it so the art is stronger, and it keeps your body from building up tolerance to it.
The protocol is 1500 mg each day two days in a row. I am doing nothing on the other days. Coartem is made from Artemesinin, that is a four day protocol, with that drug it says not to take it with grapefruit because it makes it too strong.
Posts: 845 | From Northeast | Registered: May 2011
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posted
In the about post I meant to say resistance not tolerance, it's early! Lol
Posts: 845 | From Northeast | Registered: May 2011
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nefferdun
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posted
There are two drugs in Coartem; artemether and lumefantrine. Artemether is a very potent derivative of artemisia.
I believe changing meds helps - I don't think you can take out any of the infections using just one drug or one herb. Duncani is too resistant for that. I also believe you should have an infection well under control before you try to keep it at bay with herbal treatments. I speak from experience.
I believe the goal is to weaken it with each drug combo but eventually you will reach a plateau and if you don't pay attention, you will begin to back slide. You need to change meds when you hit that plateau.
I believe that is the reason my treatment failed. The LLMD I saw required 6 month visits with a phone consultation between. I was put on Mepron/zithro a no brainer. I was given the low dose of one teaspoons twice daily, what most LLMD now believe is ineffective for duncani. At three months I had reached a plateau and asked for something else but the LLMD refused. At five months I was back sliding.
I attributed the backslide to bad Mepron that had possibly been frozen. I don't know what caused it but I was failing fast. I know it was not a herx because symptoms that were gone for months were back with a vengeance. I decided to make my own decision and get the prescriptions from the GP. Three weeks after switching to Malarone I was on the upswing.
I believe taking Coartem by itself without any follow up would be worthless. I am going to switch my drugs much more often.
I took the Malarone half an hour ago and feel the dizzy feeling starting up. It is a side effect of Malarone. Basically I am much better. I can't attribute it to just Coartem - it is everything combined.
I hope I continue to improve and beat this. I am cautiously optimistic. But this disease lets you stand and then pulls the rug out from under you, over and over. I have learned that much by now. We are all looking for the magic bullet.
-------------------- 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
PS Last night was the first night without a hot flash in as long as I can remember.
-------------------- 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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bcb1200
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posted
Neff..glad to hear it. How many Malarone are you taking / day if you don't mind?
-------------------- 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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posted
I tested positive for Microti that's not to say that I don't have Duncani too. I think for myself I have a pretty low titer now but the symptoms have come back.
Not as bad as they were, but still enough to know that if I don't do anything I'll have to start over with it.
It is said that you can never completely rid of it, that's why we can't donate blood.
So the way I see it is that I need to get my immune system working again when that happens it will take care of the Babesia.
I think this Dr. K protocol will work for me to keep the Babs at bay so I can work on the Lyme and Bart.
I might be completely off base here, but I feel like I've gotta give it a try.
Posts: 845 | From Northeast | Registered: May 2011
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