ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Some of the docs have been quoting the need for higher doses of mepron. Is this true for malarone also? They talk about mepron resistance.
My oldest son who is on malarone just had his labs come back still showing babesia despite malarone and artemesia for a long time.
The doctor decided to triple his malarone to 6 a day. He will work up slowly to avoid a bad herx as he is a college student. Now I wonder what is a normal dose. Was he on a low dose before?
Does malarone require fats with it like mepron?
Thanks for your help,
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Hubby took 4 to 6 malarone daily for about 14 months to treat babesia duncani. He did take it with almond butter. Personally I think it should be taken with fat but I am sure there are others who will disagree.
I would definitely consider adding in some other med or herb to the malarone and art -- doubtful that just those 2 things will get rid of a long standing babs infection.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
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Everytime I read this stuff Bea, I realize just how poorly I have treated Babesia Duncani. I just wish one damn time it would show in my blood smear so I didn't have to wonder constantly. All I ever had to go off is a 1:2,048 IgG titer through LabCorp. All my docs said it could be an old infection.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Hubby's LLMD gave him the name of a nutritionist who has a phase contrast microscope. This person is supposed to be very experienced with lyme and tickborne diseases.
I called and they wanted hubby's history prior to our appointment on 4/16. I spent almost an hour on the phone and amazingly was not billed. The person saw the January presentation by Dr F of the F lab and we talked some about that.
Not sure that I really believe that bart, babs and lyme is all that easy to see and identify with a microscope but for $165 we get a 3 hour appointment and a video clip of hubby's blood. It is probably a 6 hour drive to Virginia Beach but at this point we decided to give it a shot and see what happens. If I can figure out how to post the video or a link I will definitely be sharing the results even if nothing shows up.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
My understanding is Melerone is only one third the dose of Mepron. So, six melerone would be the same as two teaspoons of Mepron.
That seems to be the recommended dose to achieve good blood levels.
Posts: 131 | From Maryland/USA | Registered: May 2011
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Catgirl
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posted
I failed the mepron, which is why I'm on the malarone.
My doc said it's the one time in your life you ARE supposed to have fats. He told me to definately take it with fat.
I'd listen to Bea (above) and take it with an herb, as I don't think it will work very well alone.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
My daughter takes 2 malarone, 2 zith and pulses the liposomal artemisinin. She takes with food which always has some content of fat.
She is positive for Fry bug so we added Ivermectin, Ensalase and Bouloke. She is doing very well at this time.
Deb g
Posts: 499 | From Malta, NY | Registered: Dec 2008
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I appreciate the informative posts. I needed them so bad!
Siebert- your mailbox is full.
I tried to PM you about recommendations for adding to my son's babesia treatment of 6 malarone a day, Zhang's art 2 and GSE. He is 19 and his infection is that old.
Our doc measures our babesia with an ECP test or esinophilic cationic protein test. Spelling? My son was at 90 and now is down to 24 but needs to be below 10. He was at 16 so that is frustrating.
Thanks Bearly for helping me get the malrone/mepron dosing.
Weird I've never been told to have him take it with fats. Maybe because he took mepron prior and I was supposed to assume. He is eating college meal plan food with his malarone so I'm sure some kind of fats in it. He stays very lean though.
Deb- I think I need to look into liposomal art although it is easier if it fits in a pill pouch he can take with him when he leaves his dorm. When he is home this summer that would be easier. It is not cool to be a pill popping, no sugar eating, probiotic taker sophomore.
Testing for the Fry bug is on my list for my sickest son. Glad your daughter is doing well. I will save your post.
Thanks again!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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The liposmal art that her LLMD recommends is put in a capsule by the pharmacist. He said the taste is horrid and is much better this way.
It is a bit pricey however. My daughter will be a freshman in college in August. Woo-hoo wasnt sure if she would get there.
She will have a lot of poppin pills as well. Only she will have to remember on her on as I will not be there to hand them out Posts: 499 | From Malta, NY | Registered: Dec 2008
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I will read the healingwell site after work.
Thanks Deb for the liposmal info. I didn't realize that a pill was an option.
Glad your daughter is doing well enough for college. It will be hard when she is a away. My oldest comes home with all the med pouches he didn't take. He remembers about 90% of the time.
My sickest is taking the ACT next month with accomodations per his IEP. He is a junior now. We have a year to get him cognitively in shape. They are the last of the symptoms to clear up and it is so frustrating.
He is fighting babesia also with coartem and art.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I took 6 malarone with zith for 6 months. Now on the double dose of Mepron with biaxin XL and cryptolepis
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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Deb
Posts: 499 | From Malta, NY | Registered: Dec 2008
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Going to tackly my mailbox now. Thanks Deb.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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I just wish one damn time it would show in my blood smear so I didn't have to wonder constantly. All I ever had to go off is a 1:2,048 IgG titer through LabCorp. All my docs said it could be an old infection.
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