I've done more than one search and can't find the specific answers I seek. So bear with me .
I've been treating babs specifically for 12 or 13 mos. with mepron and zith.
~I could go look it up in my notes and tell you exactly how long, but if I do that I'll be spent and I won't post my questions.~
I stopped working (my part time job) in June. It was very harsh on my senses and really wore me down.
Doing that really helped to boost me to another level as far as improvement in my health. I have had so many good days.
Being somewhat supersticious, I hadn't wanted to "jinx" myself by talking about it too much. I was just enjoying myself and taking it easy.
Well, of course anyone who has taken mepron for any length of time knows that it can be expensive (even co-pays) and that the price can climb higher each time the Rx is filled.
I thought that maybe at my next llmd visit I would be taken off the mepron. The only symptom I had been having for some time has been air hunger.
That air hunger hasn't ever really changed at all. I've been thinking maybe it's due to bart.
Well, a couple of weeks ago the chills started again. I haven't had chills in quite some time (how long? not sure, months?)
I have also been having more headaches, frontal headaches that my llmd has previously attributed th babs without a doubt.
In my searches of the last couple of days, it's pretty clear to me that babs is active.
I guess my question is why? It seemed to be going away.
How long does it take to really get rid of it???
I know, I will ask my doctor these questions, but I appreciate your inout as well.
Carly.
Posted by nspiker (Member # 22824) on :
I have been treating babs for about 9-10 months with Mepron/Zith/Tindamax. Most of my symptoms have improved or resolved.
I tried switching to Marlarone for a few weeks, and symptoms returned.
My LLMD has me starting Larium (I'm scared to start). She said that Mepron hits the body babs symptoms, and Larium hits the neurological/head stuff.
I don't have air hunger (thank goodness), so I can't give feedback as to whether Larium will address that symptom.
Posted by 17hens (Member # 23747) on :
i thought a frontal headache was bart and one in the back of the head was babs?
Posted by 2roads (Member # 4409) on :
Carly,
I am wondering the same thing.
I don't ask it because I feel everyone has a different recovery time so it may not be that helpful.
However, I stick with ILADS professionals comments. For instance, someone posted it here but it was the doctor at Igenex lab who gave a presentation and he said if standard therapy after four months doesn't work then 8-10 moths more of therapy and/or a possible increase in Mepron dose is needed.
Dr.B treated me with a standard course of Mep for 4 months. When my symptoms persisted, he added two months, but it was more for making sure it wasn't Babs, then it was.
In your case, I would question the dose. Maybe increase it if you are taking 1 tsp twice a day to 2 tsp twice a day, but only after discussing it with your doc. A switch to malarone is another thought. Adding artemisinin is a necessity.
What do your labs look like? Maybe you have Babs Duncani. That is more difficult to get rid of. I fear we may have that too. I am awaiting results on that.
But, I am wondering when we will resolve. We have the sleep sweats, a pretty classic babs symptom, among other things.
Hang in there
Posted by carly (Member # 14810) on :
17hens- I need to double check again with him on that one. I do think it's a different kind of frontal headache, not like a sinus-y type headache. More like someone has driven stakes into the front of my head.
2roads- he initially told me 4 mos may do it, I remember that. I need to talk with him about dosages, other options.
I have a feeling he'll be as dismayed by this recent activity as I am. I don't think he was expecting this. He'll probably look to change things up with regard to meds.
nspiker- good luck to you with the larium. From what I've heard, mepron is potentially harder to handle than larium.
Posted by INEBG (Member # 27690) on :
The only person I know who has gotten rid of babesia was in treatment for it for 18 months. I do not know what strain she had. I've been takeing azithromycin, artemisinin, and mepron for 11 months for babesia duncani. I started with 1 tsp mepron twice a day, but now take two tsp twice a day. I want to be done, but the LLMD cautions me about it. He says this is very difficult to eradicate and he's seen too many patients relapse when they bump down to malerone, or stop treatment for babesia altogether. It's hard to be patient because I want to start treating the other things, but I also don't want this coming back.
I'm wondering about other meds for it, though. My friend took flagyl along with what I take, and sometimes she took bactrim. Her doctor kept changing the meds and dosage. Mine has been the same since I started except for the dose of mepron.
Posted by nspiker (Member # 22824) on :
Carly, are you on two tsp/bid? I worked up to that dose, and it made a big difference.
Thanks for the info on Larium, that makes me feel more comfortable starting it.
Posted by Imhis4life (Member # 26581) on :
My son took Lariam for 3 months and it appears the Babesia Ducani has been cleared from his system.
First titer was 1:4096 and is now negative.
I just started Lariam and one of my persistent symptoms for at least a year has been burning pain in the back of my head. Nothing in the front.
Our LLMD seems to be trying Lariam with her patients now instead of Mepron. It is her opinion that Mepron has a 50% fail rate and many have to be retreated. One doctor's opinion...
We all know with this disease, each of our bodies respond differently to each drug and often times we have to change things up to find the one that works in harmony with our system.
Posted by METALLlC BLUE (Member # 6628) on :
About 14 months
Posted by carly (Member # 14810) on :
Well, I took mostly 1tsp 2x/day until a few weeks ago when things have really started looking up.
Then I started pulsing 1tsp 2x/dy MWF. It was about a little over a month i think into this regimen that this "relapse"? began.
I can't really call it a relapse, though because all symptoms weren't resolved.
OK, 14mos, 18mos. I know this is a long haul but it's a pain in the a$$. I'm getting sick of this whole thing.
MB- yours is gone, gone? (I hope)
Oh, and nspiker I haven't tested pos.
Posted by carly (Member # 14810) on :
INEBG- I misread your post at first. So you're in the same (or similar) boat as me.
Yes, yes. Let's be patient!
Posted by lymednva (Member # 9098) on :
I treated for a year, then relapsed. So I have been treating again for 18 months.
However when I had to change abx last fall from zith to Biaxin, due to insurance denial and low wbc, I began to relapse again.
I'm on a different protocol now, and it works as long as I am on it, but I am pulsing, and on my off week I am very symptomatic. On weeks are good, unless I am herxing.
I've only been on this one for a few weeks, and will discuss this with my LLMD when I see him again next month.
I tested positive for Babs Duncani, which is known to be difficult to get rid of.
Posted by Rene (Member # 4870) on :
A year and a half with Mepron/Zith, then Cowden for a year. I still have two strains.
Posted by 2roads (Member # 4409) on :
Rene,
What two strains...Microtti and Duncani?, or something else?
Posted by carly (Member # 14810) on :
Imhis - so that burning pain in the back of the head is from babs?
That's a persistent one for me, too. I get radiating shocks from that area if I turn suddenly a certain way, sound familiar? (It's hard to describe)
Not very often, though because I don't have a lot of mobility in (one side of) my neck.
I'm going to ask abt all this when I see him this week. Thanks all.
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