posted
For those of you who are looking for a little encouragement..
I'm on week 3 of malarone and biaxin and I feel like I've turned the corner. The Malarone zapped the depression and anxiety that was plaging me. Its funny because antidepressents couldn't touch it, but malarone did!
Doc thinks I'm a little bit low on iron due to the major amounts of meds that I'm on. (6 pill of malarone a day). Need to increase iron and should feel even better.
I still have some lyme symptoms, but they are so much easier to live when you don't have crushing depression making you feel like you will live like this forever..
Just wanted to let you know!!
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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posted
I'm so glad that you stuck it out and didn't listen to all the people that warned you about taking 3 pills twice a day. These are tough infections that require agressive Tx. That's why there are so many failures here...people are afraid of the herxes and start out fractioning the correct dose, oftentimes they stop Tx for days or weeks to try and feel better, which only helps the bugs to build resistance.
If you look at the people that were successful, you will find that they treated aggressively. Wild Condor took 4 Tsp of Mep + 1200 mg Zith a day for 3 months to kick Babs. Some people are taking 250 to 500 mg once a day of Zith, and then there are the people that take really small doses of everything for 2 years and still hardly make any progress.
Posts: 134 | Registered: Feb 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Toldja.
Say bye-bye to those pretty light shows -- your brain's gonna appreciate it!!
Happy to hear your good news!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Hello- i am on Malaron now and taking 3 pills a day and having lots of hrx, but my brain is doing a lot better! The first month i was taking only 1 pill a day, with no effects. My LLMD came back from some conference and said other LLMD's are having good results with higher doses of Malaron. The 3 pills a day for the last month have done more for my brain than any other treatment for the last 1 1/2 yr. The cost is out of pocket at $500 for the 3 pills daily for the one month. I would like to be able to stay on the Malaron, but $$$$. Is there a sub for Malaron?
Posts: 8 | From butte valley ca | Registered: May 2007
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Wow, I'm so glad to read this thread. I'll have to ask LLMD about malarone. I don't even know what it is. Don't think it is listed on the protocol from our LLMD.
Ticktoxic, you made me think. Darn it anyway. I just told hubby he needed to take break from ABX, cause he's had such a bad week.
I just don't know what to do next.
Thanks for the info. Very encouraging.
Posts: 1366 | From Southeast | Registered: Sep 2005
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tailz
Unregistered
posted
I'm hopeful now - if I ever get mine approved. I forget though how much he has me at - I don't think he has me this high though.
So you need to supplement iron if you are on malarone? I was wondering about that.
I'm happy for you though. I think we all are here:)
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posted
6 malarone per day and 1000 mg of biaxin seemed a bit aggressive to me... so I was nervous, but very happy I did it.
Herxed badly on day 3 or 4, and it lasted about a week. Feeling GOOD now.. no more babs herx.
I'll tell you.. it was a bit of a nightmare to find a pharmacy that would fill a prescription with that high of a dose. Everyone is afraid of lawsuits. I had one of the pharmacist say to me, "if this makes you sick, you have to promise not to sue me". I responded, "Trust me, I'm much more sick without the drug than I will be on the drug". He smiled.
I saw the LLMD yesterday and he was pleased to hear that I was doing better. He still said that I need a FULL three months minimum at this high of a dose to be sure we got it all. So in the end it will have cost me $600 in drugs to kick the babs. thats insane.
Thanks for the well wishes. I still have lingering lyme symptoms.. but they are so much easier to deal with. If you aren't anxious all the time then you can kick back and relax a bit.
For once I don't feel like I'm going to die at age 29.
As for the iron... I'm not sure if its a malarone issue. He was guessing that my iron was low because of the complaints of being much more sleepy while on the malarone. It might be killing some of my red blood cells and he wants to boost their production.
Thank God I have found this Doc. He told me that he gets 4 or 5 calls per day (on average) of Lyme patients begging him to see them. He's already full time LYME and can't get any more appts in. IF he did, then he would spread himself too thin and wouldn't be able to spend the time required to help his current lyme patients. Maybe I should hurry up and heal 100% and get out of the way of the next person who needs him so badly.
This is a serious epidemic folks.. Once the rest of the medical community wakes up, I think we'll find a huge number of infect Americans.
Hang in there Ya'll.. It does get better.. I'm living proof.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
So glad to hear that you are feeling better! Please post again and let us know that it is a lasting well-being for you.
Now I am worried that one malarone day may have been too little to knock out my babs. I found that was all I could handle for the first two months.
Posts: 2557 | From home | Registered: Aug 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Wow. I do four malarone a day and I thought I was a bad mamma jamma!
I asked about six, but don't weigh enough at 99lbs.
I am hoping and praying as this is my second go around with this drug,
I will finally get rid of babs!
BTW, my LLMD writes DX: Babesia on my Rx's for malarone.
No one has ever questioned the dosage or duration.......yet.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Yeah!!!
Posts: 925 | From California | Registered: Sep 2004
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Vanilla
Unregistered
posted
For anyone worried because they are only on one Malarone a day.. I am only on one and getting better at the moment - I hope it lasts.
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posted
Vanilla and all. I think what ever works is what we have to do but who can say if starting with high doses is always right for everyone? People report here that they are getting better on one Malarone a day. It may not be enough to knock it out but people on low doses can always go up on the dose.
I think we have to be wary of high doses of any abx because we all don't process meds the same way. If you had an impaired liver/detox capacity what would you do?
Posts: 422 | From Luck home | Registered: Sep 2005
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posted
That's great news, Visual Afterimage Man! One question ... how are your visual afterimages and other disturbances? That has been one of my daughter's few lingering symptoms.
Posts: 164 | From USA | Registered: Jul 2005
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posted
That's great news, Visual Afterimage Man! One question ... how are your visual afterimages and other visual disturbances? That has been one of my daughter's few lingering symptoms.
Posts: 164 | From USA | Registered: Jul 2005
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i am so please for you. it's great that you have a doctor who is willing to prescribe what you need.
stick with him and hopefully you'll be posting more about how great you are feeling.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Visual Afterimage Man
Happy to hear you are doing better
Hope you keep up your good progress & continued success
Thanks for sharing Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
The afterimages and blurred vision hasn't improved on malarone. I don't think it's babesia related.
The visual stuff has improved a little bit with Lyme treatment.. but it was my very first symptom so it will probably be the last to leave according to my LLMD. He belives.. first to show is the last to leave.
Malarone has helped a great deal with brain fog, depression and anxiety. Vision, fatigue, ear itching and memory issues are still here... and doc belives it's still Lyme.
Thanks for all the well wishes.. I'm not back to 100% but it's that mile marker of feeling BETTER that we all wish for.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
GREAT news-!!! Glad to read it~!! For me I had lifting of Babs symptoms around 3 weeks in too but would decline off of Babs meds (stayed on mepron 2 years because of this, but was worth it, been so many many years since then!)- Isn't it interesting what turns out to be what!!! And how babs can cause that DULLNESS of the brain- just that DULLNESS emotionally!!!
I hope you get all things gone eventually!!!
-------------------- 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
Visual after man- I am treating babs with malarone, but one a day. Don't worry about the backslides they will
pass. These bugs cycle, and it takes a while to get through these. When I first started
malarone I was feeling good then bam, felt bad again, then good again. Now I added in bactrim
and not good again. I am trying to stay positive, which is hard because this infection
makes me depressed. There will be light at the end of the tunnel. At least now you know you have babesia and sort out the different symptoms.
Posts: 323 | From Michigan | Registered: Sep 2006
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posted
I was on Mepron for a month this winter. Stopped because didn't notice a diff.
About 2 months ago, Doc put me on Malarone. Initially, noticed that back pain eased up. But then other symptoms started, could have been a herx. Alternating diarrhea and constipation, low grade sweats (esp when awaking early morning), malaise. About 6th week, got really bad and I had to go away on a business trip, so stopped.
Started feeling better on business trip, so a week later and back home again, restarted the Malarone, this is 5th day and I notice that back pain has eased again, but had some diarrhea this weekend. Gonna stick with the Malarone until I feel as bad as when i stopped last week.
I have been taking some Advil, some anti-inflammatories, and allicin in addition to Vit D and fish oil.
Posts: 277 | From NY | Registered: Jun 2005
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Vanilla
Unregistered
posted
I did 4 months of Mepron and I was told I was done treating babs.
I then had an Igenex test were I was still reactive to it so I was put on two Malarone a day by my second LLMD. I took myself down to one pill a day when I was having sleep issues (it probably was not the Malarone that caused the sleep issues) I am still on one Malarone pill a day and have been on it for months. My LLMD said to stay on one pill a day because it seemed to be working for me at the moment but in a couple of months he is taking me off all Western meds.
I do not think I am having any babesia symptoms at the moment that I am aware of. Anyone on Malarone stick with it. The stuff sure beats Mepron in my book.
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posted
Malerone beat mepron by a long shot for me. Only 1 per day. I did 1 mo on it - 1 mo. off, till next LLMD visit, then another mo on again. Followed by the best several months I have had in years!
Mepron made me so tired I couldn't move - litterally.
I did herx on malerone, but herx got much better when I added "whole approach" yeast protocol - think it was the ben.magma that helped suck out the toxins - I would say it decreased herx by 80%. Good enough in my book!
Now it is several months later & sadly I have relapsed. Glad to hear others taking it longer and /or more per day are getting relief!Have to make appt & get back on it. Cindy
Posts: 176 | From Tenn | Registered: Jul 2004
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Vanilla
Unregistered
posted
Mepron made me ehausted too and very depressed.
Besides Malarone I am also doing Tibetan herbs. I hope to heck I do not relapse again because I should be off Malarone soon.
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posted
Ugh... I've hit bottom today guys. Sorry for the false alarm. I spoke too soon. I look forward to getting back to the way I felt last week.
What the heck? Is this a normal progression for treatment of babs? Faster cycles (up down up down) than Lyme? I feel horrid today.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
VAM:
Hang in there! I am an Atovaquone veteran. I have done both Mepron and Malarone at full dose (like you). Mepron kicks butt. Malarone slammed me.
You are going to have ups and downs. The meds are rude and so is Babs. Try not to get too discouraged. Your journey, as you describe it, sounds very typical of how Atovaquone and Babs effect us.
I am on month 3 of this round of Mepron and Zith. I have some very functional days and then will get knocked flat. From my journals I see that I exercise and work a lot on good days - making up for down time. It is a cycle. I probably stress my body when I feel good.
posted
I have some very bad side effects of this much malarone.
I get sunburned if I'm in the sun longer than 5 minutes.. not good because we like to go boating over the weekends.
The worst part is.. it has affected my skin. I have small painful sores on my private parts.. (sorry, but others who run into this might want to read this thread) I gotta stop, due to the sores alone.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
VAM,
sorry to hear that you are not feeling well. Malarone, just at one each day, kicked my butt for the first two months (roughly).
For me, it got worse after week 3.
Then about in the 7-8th week, I adjusted, got used to it, and it has been much easier ever since. Though I still have ups and downs and added a little minocycline to my treatment.
Can you speak with your doctor about cutting down your dosage, rather than stopping entirely? Feel better.
Posts: 2557 | From home | Registered: Aug 2006
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posted
I have never heard of Malarone before. Is it for Lyme or Babs, or both? Has it helped with you're visual problems? I also get after-images, etc. they are very frustrating and one year on ABX have done absolutely nothing for my visual symptoms.
Posts: 263 | From UK | Registered: Mar 2006
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
The dose might sound high but, 6 Malarone is equivalent to 2 tsps. of Mepron - the recommended dose per day, which many here take.
That said, I seemed to have a much tougher time with the Malarone than the Mepron at the equal dose. After a few weeks I lowered my Malarone dose significantly. But, I did a major backslide at the lower dose.
I am guessing that some of us are sensitive the the Proguanil in the Malarone.
VAM: So sorry about the sores and other yucky stuff. I have some troublesome GI issues (as you had mentioned) with Babs meds. I take a day off or lower my dose when this happens, until things clear up.
I think the disease is worse than the Rx so, I am sticking it out.
posted
Chris Malarone is for babs and it is a costly pink pill but one a day works for me.
VAM could a herx be bringing out an old case of herpes? I had this problem from eating too many nuts or who knows what a few months ago. Feel better!
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Boomerang
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Member # 7979
posted
I talked to LLMD today about malarone. I think hubby will be starting it next .....with biaxin.
LLMD said they were seeing great response from patients on Malarone.
He said a lot of insurance companies wouldn't pay for it though. I didn't ask him why, but now I'm wondering why?? Anyone know?
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
Insurance won't pay for it because it's friggen expensive. 180 pills (6 per day for 30 days) cash price is around $1100.
It is also not specified for use with Babesia (which according to the CDC humans can not contract babesaosis anyway). So it's not to much of an arguement for insurance companies.
As for the sores.. Doc says it could be herpes (uhh what? Never had that before.. ever. Had one sexual partner and married her), or side effect of Malarone (patient information says something about sores on the genitals) or a herx that found its way out in quite possibly the worst area. He has called in some cream and said use 'sparingly'. Great.. another drug in my system. Below are a list of side effects I pulled from Mayo Clinic. These are side effects studied at 1 pill per day. Not 6 per day like I'm taking.
Side Effects from Malarone: Blistering, peeling, loosening of skin Chills Convulsions Difficulty swallowing Fast heartbeat Hives or welts Increased sensitivity of skin to sunlight Itching, redness or other discoloration of skin Joint or muscle pain Large, hive-like swelling on face, eyelids, lips, tongue, throat, hands, legs, feet, sex organs Loss of bladder control Muscle spasm or jerking of all extremities Puffiness or swelling of the eyelids or around the eyes, face, lips, or tongue Rash Red, irritated eyes Red skin lesions, often with a purple center Seeing, hearing, or feeling things that are not there Severe mental changes Severe sunburn Shortness of breath Skin rash Sores, ulcers or white spots in mouth or on lips Sudden loss of consciousness Tightness in chest Unusual tiredness or weakness Wheezing
Sucks.. but yea.. staying with the 6 per day.. Gotta ride this one out..
I have heard people talking about Flagyl... but it can't be much worse than this can it??
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Yikes............that's a big list of side affects!!
Hubby has taken flagyl off and on. It brings out some big herxes though.
That's amazing that Malarone costs so much. LLMD told me today the cost would be around $700.
So, do you feel like the malarone is still helping you, or are you herxing big time?
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
I'm starting to feel better.. no more sores and progressing into extreme sleepiness. This is a very familar herx cycle for me. I just wasn't expecting this much of a back slide right after feeling good. Whatever.
Must have been a herx from hell.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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posted
Okay... To conclude this post... Which started out positive and ended quite negitive...
Yes.. Malarone did help me quite a bit. But right after I posted this topic, I got hit with a major herx. It was quick and dirty. It started to sink in on Sunday and peaked on Monday. Tuesday it let off a bit and then by 5:00 PM on Wednesday it was nearly gone.
So... What I can tell you.. Yes I have felt major improvements on Malarone, but I have major 3 days herx's as well. I haven't felt that bad since I first started abx a year ago to initial treat the Lyme. I never thought I would have to go back to that 'dark place' (as I call it) again since I Had made so much progress.
But.. It appears that Babs is like Lyme. You get herx's.. and they suck... but they are shorter (for me anyway) and more severe. I guess I know what to expect the next time I feel myself taking a nose dive.
I'm also glad that I was able to post about the sores. Someone else doing a search on that topic now has a thread to read. If you need more info.. PM me.
Thanks for putting up with my up and down.. its actually quite interesting to see my posting time.. you can actually see me sliding down and down and down on Monday until I hit rock bottom near late afternoon. Talk about a fast crash time. Lyme herxes take days, not hours, to change in severity.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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You asked a few weeks ago whether babesia could/should be treated without positive tests. My husband is being treated without a positive test because his LLMD thinks he has babesia symptoms.
Posts: 984 | From San Diego | Registered: Nov 2006
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He's taking: Mepon (1 tsp, 2x day), Artemisinin three days on/three days off, Plaquenil, Biaxin (couldn't tolerate Zithro after a while), Doryx. He's been on Mepron about three months now. I know you've been researching this for a long time. Hope you find something that works for you!
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
Glad I read this thread and people are having success with Malerone. I was on my 4th week of Mepron/Zithro and had to stop because the Mepron turned my vision a tint of yellow. According to Dr. B's guiedlines it should be temporary and clear up in a few weeks. LLMD told me to stop Mepron and continue taking the Zithro. Well 3 days off of Mepron and the Babs symptoms are back. Heart is pounding, Sweating, Air Hunger and Bad HEadaches. I didn't realize how much better I had felt on the Mepron/Zithro until stopping and seeing these symptoms come right back. I will call my LLMD on Monday and see if we could try Malerone instead of the Mepron.
Posts: 17 | From Boston | Registered: Apr 2007
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