Trying Malarone - anyone heard of it? - Lyme Disease Message Board

6Blues · 01-01-2007, 05:53 PM

Hello friends.

I have such horrid fatigue.

After 12 hours of sleep, I can stay alert for maybe 5 or 6 hours before I can barely keep my eyes open anymore.

My LLMD gave me daily B12 shots to try to battle this fatigue but I don't think they are working.

I am fearful of losing my job if I don't get this fatigue under control.

I am going to try Malarone starting tomorrow, as I suspect the fatigue may be from Babesia. I tested negative for Babs.

I asked my LLMD to put me on Zithromax/Mepron combo but she said no.

My insurance company didn't pay for the Malarone script, so I am paying cash for the it.

Anyone have heard of Malarone? Any luck with it? Is it as effective as Mepron?

For those with Babesia, how long does it usually take to respond to the antimalarial? How long did it take to beat the Babs?

Thanks!
McBlues

ticker · 01-01-2007, 06:46 PM

Hi 6Blues. I am sorry you are having such bad fatigue, I know it well.

Why won't your doctor prescribe Mepron and Zithromax? I am not familiar with Malarone. Many people herx on day three and week three when treating Babesiosis, but I don't know if it would be the same with Malarone. I think Malarone is similar to Mepron. With Mepron, you need to eat something fatty when you take it so it will be absorbed properly. Check to see if this is true for Malarone also.

I suggest finding out who manufactures it and contacting them to see if they have a prescription assistance program. Many drug manufacturers do and will provide the meds at low or no cost for those who are uninsured or whose insurance will not cover it. These programs really do work. Every little bit helps.

Good luck! I hope you feel better soon.

6Blues · 01-01-2007, 09:17 PM

Thanks Ticker.

I'm picking the script up tomorrow and I will ask the pharmacist for any tips on taking the drug and if he knows if Mepron is any more effective against malarial organisms than Malarone.

I don't know why Dr. E didn't want the Zithro/Mepron combination, but I will ask next time I see her. She is a professional doctor and a great person so I trust her decisions.

Maybe she didn't want me taking the Zithro/Mepron with the Levaquin I already take?

If I have to take fatty food with Malarone, heck, that will be easy - alot easier than avoiding dairy with my other drugs!

I will check the website the Malarone manufacturer web site for assistance, but I honestly don't think I will qualify. I made over six figures in 2006, which sure looks like a whole lot of money, but I'm broke from all the medical bills. It so silly and ridiculous that I make so much income and I live paycheck to paycheck.

It won't hurt to apply for assistance with Malarone - so thanks for the reminder.

How long did you suffer with the fatigue? It's horrible isn't it?

How many hours per day were you able to stay alert? How many hours per day did you have to sleep?

How did you manage to get through it? Did anything help you at all? Were you able to hold down a job with the bad fatigue?

I am afraid of losing my job if someone catches me sleeping.

However, I feel so happy to come here and talk to folks about my fatigue. Who else would understand exactly what I feel and exactly what I'm going through?

Most others (friends / family) that I talk to about fatigue say "Oh. we all get tired."

This isn't just "tired" ... this is more like struggling to be awake and alert for a few hours a day. It's constant fatigue, always ready to drift off to sleep, always drowsy, never feeling that engertic, all day full-of-life zest that we all used to have.

Ticker, it's a miracle that you are here with so much energy to jump in and help all of us.

How did you make it through the hell of Lyme and all it's co-infections and come out alive, and awake and smart and compassionate and willing to help anyone?

It's breaks my heart to think that somewhere out there, someone is going through what I went through two years ago.

It hurts me to think that someone, maybe in my own town, is suffering from wide spread symptoms and is not being taken seriously by thier family and friends and mostly doctors who are negligent in thier knowledge of Lyme disease.

You are amazing. I hope someday I can be like you .... always ready to exted my hand to someone suffering with this disease and offer help to them.

I hope I can spread the word.

God bless you ticker. Peace and health to you.

ktp812 · 01-02-2007, 05:45 AM

6Blues

I know the fatigue well. It was probably my 4th symptom to appear and it was bad. I would wake up tired and barely get through work. I actually had to cut my hours down because I just couldn't do it anymore. My social activities came to a stop. I haven't been out to dinner in over 2 years since this started. There are no words to describe what the fatigue feels like. You just can't explain it to anyone. At times I thought I would go to bed and never wake up. I was lucky to have a few hours where I could do anything and even that was hard. My fatigue does feel more like total body exhaustion rather than a sleepy tired but all I want to do is lay down.
Along with the Lyme I have adrenal burnout so that just contributes to the bad fatigue. I just started treatment in November so I am now even more fatigued with the herx symptoms. I am only on a low dose of cortif to help with the adrenals. I just wanted to reply because I KNOW exactly how you feel.

Kim

ryebeach · 01-03-2007, 04:35 AM

hi again
i found this on the web thought it might help
The daily dose should be taken with food or a milky drink at the same time each day (see Precautions). In the event of vomiting within 1 hour of dosing, a repeat dose should be taken. Should vomiting continue, alternative therapy should be considered or the patient's parasitemia should be monitored.