posted
My wife has Lyme and Babesia. She was on doxy for the past 3.5 months, and made some improvement but still has lingering chest/rib tightness.
Today the LLMD felt it was time to stop Doxy and start Mepron/Zith.
From many members here I've heard some horrific stories about Mepron. To name a few: panic attacks, vision going hazy/yellow, out-of-body experiences.
I'm not sure if my wife could handle Mepron - she could barely work up to 300mg of Doxy.
Can anybody give me their inputs/thoughts? Is the potential killer herx + setback worth it? Is the Mepron guaranteed to kill babs? What is the typical length of time you must take Mepron?
Is there a gentler alternative to Mepron? What about Malarone? Is is gentler? Does it combine well with Zithromax?
Looking forward to hearing your thoughts before I pick up the prescription.
Posts: 655 | From USA | Registered: Sep 2007
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sixgoofykids
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My LLMD's opinion is to hit it hard right from the start so it doesn't have the time or ability to hide.
I actually felt better when I started Mepron ... the herxes were hard, but not any harder than I was prior to starting any treatment.
It will be tough, but in the end, it will make her feel better.
Mepron is stronger than Malarone according to my LLMD.
I was on the Doxy along with the Mepron/Biaxin (instead of Zith for me).
Once she is used to the Mepron/Zith, you might add Artemisia. My LLMD's experience is that Mepron or Malarone with Artemesia works better than either alone.
I took it for 8 months, then switched to 1 Malarone, Art, and Lariam. I've been treating the other infections at the same time.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CaliforniaLyme
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posted
I LOVED Mepron(_)!_!(*_!(_!(
Tastes like sweet banana syrup!*)!*)! Yum*)!
The yellow vision is weird but doesn't hurt. It is kind of neat actually, like wearing tinted glasses- and passes quickly-~~!
ZITHROMAX is what can be hard- on the guts- make sure she takes probiotics*)!*)!!!!!!!!!!!!
Mep & Zith got rid of what I had THOUGHT were residual LYME symptoms- but it was BABS- arthritis!!! In my hnads- I thought was Lyme- was Babs*)!!!!!!!!!!!!!!!!!!!!!
My 2 year old LOVED mepron too!!! Yum!!
You HAVE to take Mepron with high fat otherwise it does not absorb into the body. Can just be a little of high fat, but needs to be at the same time!!!!
Give it a chance- the Herx does not usually last as long as Lyme herxes- and it can bring relief of many symptoms-!!! best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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sixgoofykids
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Umm, you liked it? Yuck! LOL
I didn't get the yellow vision.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I went to the pharmacy and picked up a month's supply of the Mepron/Zith.
I cannot believe what the Mepron costs - maybe it contains gold dust? Very glad my insurance covered it.
Mepron looks weird. Intense yellow. I wonder if the chemical compounds naturally give it that color?
I sampled some for fun - it's actually pretty tasty, banana or juicy fruit gum flavor?
I think my wife will start the Mepron Thursday morning since I have vacation Thurs and Friday for Thanksgiving. It'll be handy to have me around in case she has an ER situation.
I'll let you know how it goes!
Posts: 655 | From USA | Registered: Sep 2007
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kelmo
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Member # 8797
posted
Watch for depression and/or hallucinations. We started full dose right off the bat, and this hit my daughter after the first week. We had to back off.
Vivid nightmares, as well. I don't mean to scare you, this may not happen to your wife at all. Just don't be surprised if you do.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Kelmo: Thanks for the warning. She'll be starting half dose for a week then go full. We'll keep an eye out for that stuff.
Posts: 655 | From USA | Registered: Sep 2007
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posted
I've been on Mepron/Zith for about 3 months...
It has helped me SO MUCH! I also take Art with it...pulsed...
it definantly made me very depressed and have suicidal thoughts...frown...but I made it through- lasted a few weeks...night sweats and vivid dreams too...
the dreams really bothered me...
not to worry you, just another input...everyone reacts differently...
never had the yellow vision...
but once I got through the nasty-ness...I saw the LIGHT!!! noticed dramatic improvment...
your wife is very lukcy to have you....you are sound very involved --trying to understand all this....truly makes the world of difference to have such support...your a saint..
best to the both of you and the new treatment plan...
keep us posted...
smiles and love fawne
-------------------- Energy flows where attention goes~ Posts: 302 | From Kauai | Registered: May 2007
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I'm not a saint - I actually find it kind of fun to research this disease and experiment with protocols and herbs, and hopefully get her cured.
I loved science experiments when I was a kid.
Posts: 655 | From USA | Registered: Sep 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I'm probably another one you saw on the thread talking about crazy side effects from Mepron, but I did want to say that it's been a wonder drug for me with the zith and art.
Yes, she may experience some crazy things, BUT it's very short lived and in the scope of things, it does help bring you closer to feeling better in the long haul so it's totally worth it.
Lyme and co's are horrid to begin with and the treatment isn't always fun, but neither is the disease. We do what we can to kick it out of our systems and mepron is highly touted if you read these boards.
I know when I would try new meds, I'd look at all the worst cases of what side effects or reactions might be and MOST times, they didn't happen to me, but being educated on what MIGHT happen, doesn't leave you hit blindsided.
I still imagine most of us saying these weird things have happened, would still go back on mepron if we had it to do again since it does make a difference in our health. Good luck to your wife.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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sixgoofykids
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Cathy, you are right, I would definitely take Mepron again! In fact, I resisted getting off it and didn't right up until I started Bart treatment.
My husband tested it, too, and liked it .... I think it's because he didn't try enough! LOL When you get a whole spoonful, it has a bite it just doesn't have when you take a little taste. After a while I didn't mind the taste, but I never really liked it.
The yellow is the natural color of it. Many of us wanted to have it made into nail polish.
It's a wonder-drug!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
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posted
Babs herxing commonly includes- just so YOU know in case your wife has-
nightmares night wakings suddenly with palps increased chest palps if has them (but then they can go away forever like with me)! some people have rages (don't be mad at her) spaceyness & dizziness to point of feeling loaded headaches flushing/skin
These things usually pass quickly in the first week or so!!! But can be temporarily intense- so just give her lots of love*)!*)! She is so lucky to have you*)! Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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sixgoofykids
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quote:Originally posted by CaliforniaLyme: Babs herxing commonly includes- just so YOU know in case your wife has-
some people have rages (don't be mad at her) spaceyness & dizziness to point of feeling loaded
Oh, yes. My hubby is a saint .... when I'd rage and say mean things, he'd just hold me if I let him. If you have kids, you might want to warn them that Mom's medicine might make her mad when she's not really mad .... it's not their fault, nor hers ...
My kids would end up teasing me about it on a better day.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
This is an encouraging thread. I just started Mepron/Zith a week ago.
The herx isn't as bad as expected, but I have a feeling I haven't hit the worst of it yet.
So far I've experienced:
Dramatic increase in nerve pain; RAGE-- literally feel like punching someone; Disconnected sensation, hard to explain; Difficulty talking; Brain mush; Headaches; Sweating; Crazy dreams! Anxiety (not as bad as Lyme herx though).
Pretty much everything Sarah listed.
Anyway, I would like to ask all those who posted re: positive results with Mepron:
How long into treatment until you started to notice improvement? Was it dramatic, or little steps at a time?
Did your herxing follow a cycle? or discernable pattern?
Do you feel by chance that the Zith in combo also helped your Lhyme?
Thank you! I'm just feeling pretty dicouraged here. I really need this stuff to work, otherwise I don't know where I'll be. I hate herxing like this. Many days it's hard to see the light, even though I have to keep believing it's there.
Good luck to your wife and all Mepron newbies. We're in this together. Posts: 390 | From Oakland, CA | Registered: May 2007
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posted
oh also: how much art do you take? what brand? and when did you add it in with the mep and zith? right away?
thanks Posts: 390 | From Oakland, CA | Registered: May 2007
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shazdancer
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posted
Check with your pharmacist for possible side effects. And be sure to call the LLMD if your wife has any reactions that concern you.
Watch out for ringing in the ears and hearing loss, especially if she did not have it before Mepron/Zith treatment, as it is a possible side effect with Zithromax, and may mean she will need to take something else.
For me, the reactions were as intense flu-like feeling (dizzy, achy, low fever, exhausted) on day 4, a little less intense at week 4.
Good luck -- let us know how it goes.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Tracy9
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OK, I think the Mepron can also cause delusions...as evidenced by anyone here who says it is YUMMY!!! Sorry Sarah...but it literally makes me GAG!!!
I was "non compliant" as my LLMD puts it with my first course. I tried but could only stand it on average once a day.
However I did start to feel a little better and then when I ran out, BAM. Like I was hit by a truck. I crawled into my LLMD's office promising to be a model patient and take it faithfully....
Two weeks into it and I need a refill, and my insurance has to authorize it. Now I am without it for a few days. I am wondering if this will set me back? I was just having a horrific herx; as Ellie says, "cemented to the bed." Oh yeah, know THAT feeling!!!!
Anyone have any ideas? I will end up having been 2 weeks on, then about a week off with Thanksgiving by the time I get it. I'm continuing the Zith in the meantime.
BTW, the Zith makes my ears ring but my LLMD wasn't concerned.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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CaliforniaLyme
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Ellie K- I had a lot of things go away that I had assumed were residual Lyme damage- the arthritis in my hands most notably- was Babs- not Lyme- but then if I went off mepron it would come back- so I stayed on until it didn't come back- 2 YEARS (it will make you feel better I hope to know I am the longest Mepron user I have ever met! Doc J keeps kids on for long times!)
Tracy9- yup, full sensory delusions where it tasted really good*)!! you know, I've met people who hate Mepron and who actually would vomit sometimes when taking it because they hated the taste so much! Weird. My kid was delusional, too- she loved it too- we used to both lick every drop off the mepron spoons- !*)!*)! Yum.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I was nervous about starting. I have been on it for five days. I had bad herxing the first couple of days, headaches, pain all over, deep pain in the bones and joints, tingling in head, face, etc.
The taste doesn't bother me (and I'm picky) I didn't feel sick to my stomach or throw up (and I have a sensitive stomach)
By day 5 the herxing starting improving, although I know there will most likely be more coming.
Mepron wasn't nearly as horrible as I thought it would be.
Posts: 38 | From Lincoln, CA | Registered: Nov 2007
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posted
My wife started Mepron/Zith yesterday. She has not had any herxing yet, and luckily no allergic reactions. We're bracing ourselves for Sunday - People mentioned that the herx may start on Day 4?
Posts: 655 | From USA | Registered: Sep 2007
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posted
I am with CaliforniaLyme on the Mepron taste. Didn't bother me at all.
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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WildCondor
Unregistered
posted
You could try malarone, but Mmepron is good stuff. It helped me very much along with Zithromax. Make sure you eat fats when you take it like ice cream or butter, olive oil etc, when you take the Mepron, you need to do that so it is absorbed. It tastes like banana with spices, its not bad, just funny looking! It works. If you get a rash when you start it, it may or not be an allergy. i got a rash both times I took Mepron and it was a side effect of the Mepron, not an allergy,. i kept taking 3 teaspoons per day for 5 months and was fine, it cleared the babesia.
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