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» LymeNet Flash » Questions and Discussion » Medical Questions » Lariam for (maybe) Babesia?

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Author Topic: Lariam for (maybe) Babesia?
Ann in CA
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As I had a big allergic reaction to Mepron after 10 days last summer (major itchy complete body rash) my LLMD had me on Biaxin & Omnicef until a couple of weeks ago. I was supposed to start Lariam & doxy, but have not done so due reading conflicting reports on lariam.

I was supposed to take the 5 tablet first day dose, and then once a week thereafter. However, due to the Mepron experience, I called my LLMD to ask if I could do the one tablet for 5 days first dose, and though he prefers the 5 tablet first day dose, he said OK.

But I still have not been able to make myself do that, as a bad reaction ("rarely") can result in permanent damage, rather than just a mega rash that goes away after a couple of weeks.

Part of my hesitation is that I have never had much in the way of babesia symptoms, and only tested positive a year ago (Igenix), and have negative tests since then. (still positive lyme tests though) However, since stopping the Biaxin/Onicef, the stiff neck is getting worse, eye and ear pain is increasing and general headache is frequent which I have rarely had before. Some of this was starting before stopping the last abx.

I have had virtually every combo except IV over the years, most of the time I have been in pretty good shape, but never able to stay off abx for long. Last March, due to cataract surgery, I had to have prednesone drops in the left eye for over a week. Even though my neuro surgeon and my LLMD said that probably would not have much of a negative effect, I feel that I have been going down hill since then, especially with the vibration moving even more into the other side of my face and body.

So how soon would Lariam show negative effects? I have read about people on safari in Africa, taking it as a Malaria preventive. and suddenly having severe mental problems, some resulting eventually in death. As I have had no prior problems mentally, my doc thinks no problem. But if one has a brain already infected, what effect would the die off have on the brain?

Nothing prior to this has had me so concerned. My local doc was on lariam for a year and a half with no problems when he was researching malaria, and he said in the last ten years he has had only two travel cases with problems.

It just would be nice not to always have to make one more decision I'd rather not be making at all.

Since the computer really bothers my eyes, I have searched and tried to read all lariam posts, but may have missed some.

Thanks for any experiences you can relate.

Ann

Am wearing sunglasses now...anyone else do that on the computer? Sometimes it just seems so bright.

Posts: 283 | From Northern California, USA | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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I hallucinated the first two times I took Lariam and I never took a "loading dose". I would be afraid of the 5 at once after my experience.

I don't know that this is a common reaction, but it happened to me. They weren't scary hallucinations .... one was auditory, it sounded like encyclopedias were being dropped onto the wood floor .... the other was seeing my husband talking to me, but he was out of town.

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Ann in CA
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Did you stop after the first two times? And if you kept taking it, how effective was it?

Thanks!

Posts: 283 | From Northern California, USA | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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No, I continued. I was also on Malarone, but the combo didn't work as well for me at Mepron, so I went back to Mepron. The Lariam did seem to hit something, so I was on it for a couple months before I switched back to Mepron.

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Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Sammi
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Initially, I refused to take Larium because of what the possible side effects could be. I have now been on it for some time, and I have had no side effects or problems whatsoever.

My doctor does not prescribe the loading dose. It is prescribed one pill every five days, but I actually take one pill every seven to eight days. Maybe you could speak to your doctor about taking it evey five days with no loading dose.

Good luck!

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nybasketball212
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sixgoofy-

how long did it take you to notice any type of improvement on the mepron?

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sixgoofykids
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Nybasketball, I don't remember. I started it in Jan. and was bedridden. By the end of the summer, and after many medication changes, but always on Mepron, I was having some good-ish days compared to how sick I had been.

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Abxnomore
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Lariam can be very effective but it certainly produces terrible symptoms in some.

I would never suggest the loading dose but if you take the weekly dose you most probably will know very soon if it is affecting you in an adverse way. If it does, just stop it ASAP.

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baileypup
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I have been taking Lariam for a few months now, and have had no side effects. I also was afraid to start the medication, and held off.

My LLMD prescribed a loading dose of 1 for five nights. I started out taking a half a pill, and then another half a pill the next day, before I got up the nerve to take a full dose.

I have found Lariam very effective, and continued to improve. In fact, some symptoms were returning every fourth day, so my LLMD increased the dose to 1 pill every four days, instead of every five.

My LLMD also said, if there is no history of psych problems, and you're detoxing enough, then you will do ok.

Posts: 964 | From san diego | Registered: Oct 2009  |  IP: Logged | Report this post to a Moderator
Ivy
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I took Lariam a year ago after Mepron did not work.

Lariam did work for me. I did not do the loading dose and I did get hallucinations at the very beginning. (One was a huge black spider on my arm)

I had to stop Lariam because I developed severe itching of both arms and the back of my neck. It was so bad in the beginning I would be up in the middle of the night scratching for 3 - 4 hours with arms bleeding. True torture like I have never experienced in my life.

The only relief was and is ice.

I still suffer with this a year later. It is mostly around my elbows now instead of my entire arm length and neck and it rarely wakes me up now. It also no longer bleeds since I am not scratching as much.

I diagnosed this as brachioradial pruritis. There is no cure. I am hoping it does not get more severe with the warm weather as I read it does for many people.

This is scary - although I don't regret trying the Lariam because the Babs symptoms were worth a shot. I just did not want to lay down and give up and I still don't.

After stopping the Lariam earlier than planned, the Babs symptoms were back within 3 months.

I don't want to scare anybody from taking a chance to make themselves better - I am just sharing this because information is power.

I would just say use Lariam as a last resort.

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Ann in CA
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Thanks everyone. Was trying to make a decision by Monday, as I can take the Igenix tests again then, and since I have been off abx for a couple of weeks, maybe the babesia test would be positive again.

It was pretty discouraging to have symptoms worsen so fast after stopping abx though. I assume since the lyme was more under control (although I am still testing IGM positive by Igenix) that is why the babs started to show up. Have never had air hunger or most of the other symptoms though, and really don't want to treat babs if that is not what is causing the stiff neck, base of back of skull pain and eye pain, plus worse word recall, short term memory and typo errors.

It was not my LLMD's idea to stop abx. I was supposed to go directly to doxy and lariam. After reading about lariam though, just couldn't do it. Still can't decide. Please keep those lariam experiences coming!

Many thanks.

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onbam
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Ack--no way I could do it after reading some of this stuff:
http://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=102x585415

http://www.chicagoreader.com/chicago/lost-to-lariam/Content?oid=1201006

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blinkie
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I've been on lariam about three months. I took one pill the first day, two pills the second day and two pills the third day. My LLMD wanted me to take the loading dose as one pill every day for the first five days but I was in a hurry!

Now, I take one pill every four days as just like kspiker said, symptoms would return prior to the next dose at the seven day interval.

I had one episode in the middle of the night that lasted one hour about 1.5 months into it. It was a mental break-down of sorts. BUT-I was taking another medication at the time that was causing me wicked insomnia. I'm certain the lack of sleep is what cuased the episode since it happened in the middle of the night because I couldn't sleep and had hardly slept for three days.

So far, I'm having some better days. Some days where I don't need a nap and can function relatively normally all day. I'm also taking bactrim DS, zith, flagyl and pulsing art.

art has been an important part of the equation for me. If I don't take it, I get night sweats. But, it is very evident that when I do take it, I don't sweat at night.

The lariam has cleared my remaining brain fog and memory loss issues as well as light sensativity and cleard heart/lung symptoms 80%. I know if I stop now, I'll get sick again so I'm staying on this combo for now.

The clearing of light sensativity has been dramatic. So much so that I can drive without sunglasses if I want to. I used to have to wear usnglasses if I wanted to even look out the window.

I don't know if I have babesia or some other protozoal infection. But, I'm going to switch the lariam for mepron at some point, then hit anti-malarials hard and heavy to try to beat this crap. It's the thing keeping me disabled still and I want it gone.

With lariam, I think, just being aware that it "could" cause mental episodes is good to keep in mind while on the drug. If it happens to you, stop taking it and call a Dr. Just know it's from the med. Although, i think that side effect is more rare than you have heard.

Son't mind my typos, I type too fast and don't feel like correcting. It's not the larium! =)

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Ann in CA
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Good results and bad resutls...that is the problem. How to weigh for myself. My main concern is that I don't want to take a hard core drug if babesia is not really a part of the mix. But I have managed to hold out without abx long enough to take the Igenix test tomorrow.

I asked my LLMD about artemisinin at my appointment last month, as I had often read about it used with babesia treatment, but he doesn't often go for anything beyond abx,(well of course probiotics and I am sure some others) which sort of surprises me as he is well versed in tick borne disease treatment, and is at all the conferences, very active in ILADs, etc. Can't remember exactly why he said he would not recommend it.(and I used to remember everything...so annoying.)

Thanks again for opinions on both sides!

PS Now if I get the test tomorrow, results won't be back for 10 days or so, so still will be up in the air. Have to do something soon. I have waited too long to go back on abx in the past, and ended up with permanent left knee damage, left eye damage,etc, so know a decision must be made soon.

Posts: 283 | From Northern California, USA | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
   

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