lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hey all,
I have been treating babesia for going on five months now. 5 malarone a day plus 600mg of Zith.
The first two months were pure hell from herxing, but I after that I made steady progress. My energy returned, brain fog lifted and the "sick" feeling that had been constant for 3 years just seemed to melt away.
Basically I was back to the land of the living. Well, about three weeks ago the "sick" feeling came back. It has come and gone for the last three weeks and I'm so tired I feel like the walking dead. I'm also back to having chills on and off throughout the day, which has been a major babs symptom for me.
I don't believe this is a herx as it has now lasted for three weeks and my symptoms are gradually getting worse.
I don't understand how my babs symptoms are coming back while still on malarone and zith. Has my babs become resistant to my meds?
Or, is it possible this could be Lyme popping up? I have not been on any Lyme meds for five months, and I suppose Lyme can cause chills, fatigue, sick feeling, etc.
I'm just kind of at a crossroads here and not sure what to do or what is coming back to bite me in the butt, so to speak.
I have an appointment with my doctor Jan. 20 but in the mean time would love to hear from others...
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Sounds like babesia, so maybe the malarone is no longer effective for you. Can you get some mepron?
Also, yes, the lyme could be coming back. My LLMD rotates Lyme and babesia meds so neither can get the upper-hand.
Hope you find the solution!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Thanks TuTu,
I'm sure my doctor will put me on Mepron if that's what I want him to do.
What about Artimisinin? I would like to try some natural alternatives at this point...
How are YOU doing? Have you finally gotten rid of that nasty kidney infection? I hope you're feeling great and are enjoying the Holidays!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
This is just an idea, it makes sense to me, but that isn't saying too much; but maybe you have been on the Malarone for too long. Maybe the babs would not become resistant if you took it for shorter intervals. On for 2 or 3 months and off for a few. I know when treating for Lyme we change our antibiotics more often than every 5 months.
I have been treating Babs for 2 months and now I am going off the Malarone for a month before my next appointment to see how things go. Maybe taking breaks helps with the resistance factor.
I know many people don't agree with this, but I still think smaller doses and periodic breaks seems to be the way to go. At least for me anyway. As my body can't handle large doses of meds.
I hope you get to feeling better soon!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I think that it is Babs coming back because your dose was too weak. The Minimum amount of Mep is 750 mg bid which is = 6 tabs; you weren't even getting that with 5 tabs of Malarone a day.
The additional ingredient in it doesn't make up for the reduced amount IMO. Besides that, you would have to add in high dose Art + Bactrim or Plaquenil to boot, that is if you want to get rid of it instead of just getting rid of the Sx's while you are on the meds.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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posted
Let me say first of all that I am not a medical person. The info I have on babs is acquired through reading books, articles on various web sites.
Babesia generally infects and lives in red blood cells. The life cycle of a red blood cell is about 4 months. When the blood cell dies you have babesia floating around in the plasma looking for the next blood cell to infect. (I've seen a lot of board discussion about it being imbedded in other tissues as well, but I haven't seen this yet in any scientific articles.)
The antiprotozoal meds like Mepron can hit the babs more easily when it is outside of a red blood cell. So you need to have the med in your blood stream for at least four months to increase the odds that you've hit the bugs when they emerge from the dying cell.
Posts: 170 | From New Jersey | Registered: Jun 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My understanding is the same as lymepool.
Lauren wrote: I have an appointment with my doctor Jan. 20
I would call the office and leave a message. Perhaps he can adjust your meds NOW rather than waiting for a month+.
I've had lyme meds on board to keep lyme under control the whole time I've been treated for babs and then bart.
After 7 months of treating babs I had a relapse after going off mepron and my symptoms were similar to what you describe.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Try larium.
I spent a lot of money on mepron and malrone. Still had high paracitemia. It was Easily visble in blood smears. A 2 weeks of larium and it pretty well wiped out all of the babesia.
It has a lot to do with strain resistance. Malaria has the same problem.
Larium may not fix the problem but having to keep uping ataviquone dose does not make sense to me if it is not working at all. Maybe to wipe out the infection totally (Which I donlt think can be done anyways) high doses might work but if it is going to work there shuold be some effect on the babesia population on the initial course of the drug.
At least thats what i think.
Posts: 1184 | From north america | Registered: Feb 2003
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
You should NEVER stop and start babs meds as babesia comes back quickly so you will be back to the beginning if you still have it untreated. you probably need a babs meds change as it looks like the malarone is not working any longer.
There are many many babesia meds and for me malarone stopped working and mepron did very little other than empty my bank account!!! so I had to switch to Clindamycin/Quinine Sulphate at very high dosages for 8 weeks and then stay on a maintenance dosage Clindamycin 1200mg a day (now on 900mg) Quinine Sulphate 1300mg a day (Now on 975mg)
I have also just added Artemisinin to the regime at 400mg a day pulsed , 3 days on 7 days off - It was planned to do 1200mg a day 3 days on 11 days off but my herx's were too stong on Art.
I have made incredible gains on Babesia meds and have gone from being totally housebound to being able to walk for hours in a day, although I know its still very much there and will have to throw everything at it to keep it down.
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
quote:Originally posted by david1097: Try larium. Larium may not fix the problem but having to keep uping ataviquone dose does not make sense to me if it is not working at all.
I totally Agree Rianna
Posts: 1172 | From UK | Registered: Jan 2007
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Tincup
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
This is insane! I feel like I have been drugged...and I mean that literally. A year ago I would go days at a time without sleeping, I prayed to get an hour or two.
Night before last I fell asleep at eleven o'clock and slept until noon - that's thirteen hours. And I mean it's the deepest sleep! I was up from 12 until 4 and then was so exhausted that I went back to bed and slept from 4 until about 8. Then went back to bed for good at 10 and just woke up again at 10:40.
That's about 30 hours of sleep in 48 hours. And BTW, I would LOVE to go crawl back in the bed right now!
I'm expecting a call back from my doctor this afternoon and will see what he says.
For the brief period of time I was awake yesterday, I thought about what was going on in my body. I actually think this is Lyme, and since there's nothing in my system to kill it, my body is wearing itself out fighting it - hence, suddenly requiring 18-20 hours of sleep per day.
Even when I was heavily infected with babs, I was tired all the time but I didn't sleep like that - actually I had pretty severe insomnia.
And the sick feeling...it will come over me so suddenly and then vanish within minutes...very strange. This happened to me the first few months or so when I became infected with Lyme - I thought I was crazy because it would come and go so fast. So sick I could barely move and then and hour later feeling completely normal.
Lyme is famous for the quick coming and going of symptoms. Babs is more constant. Who knows though...
Thanks to all of you for your responses and opinions. I'll post later after speaking to my doctor.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Oh yeah, Let me also add that the "crawling" sensation is back. I haven't had this in a loong time. It started about three weeks ago with everything else.
Another reason I think in my gut this is Lyme...
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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sutherngrl
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Member # 16270
posted
Lauren read the latest thread by Lymetoo on Toxins. I think its still close to the top. I know we disagree somewhat about conservative and aggressive treatment, and I'm not saying that I am right by any means; who knows really! But just IMO I think your doses of Malarone have been really high especially for your teeny tiny size. At least some of what you are feeling may be toxins due to over medication.
The lower doses, slow and steady are really starting to make more sense to me lately. At first I questioned that form of treatment and who knows I may question it again, but as of right now it really makes sense that we can over medicate ourselves and make ourselves very very sick. This is just an opinion, not to be taken too seriously but maybe something to consider.
I really hope you feel better soon. I understand how frustrating all this can be.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hey Terry,
I totally agree with you and this is something I've thought a lot about. We're both really tiny women, that's for sure! I am actually taking a short break from meds now.
5 days off everything, and then starting minoycline and flagyl. We'll see what happens!
Can't wait to see you all after Christmas!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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sutherngrl
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posted
We will have to get together in Jan. Can't wait to see you too.
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Lauren,
Just be sure you use brand name Flagyl, not generic. It makes a difference.
Also, you said: "And the sick feeling...it will come over me so suddenly and then vanish within minutes...very strange. This happened to me the first few months or so when I became infected with Lyme - I thought I was crazy because it would come and go so fast. So sick I could barely move and then and hour later feeling completely normal.
Lyme is famous for the quick coming and going of symptoms. Babs is more constant. Who knows though..."
quote:
Is this just a symprom of Lyme? I get this quite a bit. Can it be a sign of other co-infections, or is it just LYme? You said babesia was more constant. Does this happen for everybody?
Good luck to you.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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