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Posted 7/29/2015 4:51 PM (GMT 0)
So I've been sick since Sept. 2013 but recently diagnosed with Lyme and Babesia (and maybe Bartonella) in May....I've been on meds since May and while I've had some good days where I've felt improvement, I still have days where I think nothing is getting better, like one step forward two steps back. I know this isn't going away anytime soon, but does anyone else with Babesia have any idea how long it takes to totally destroy it? or how long did it take for improvement to start showing? I think the Babesia is worse than the Lyme (for me) and the dizziness/light headedness has been a constant nuisance. What are other peoples' experiences with Babesia and how long it takes before I get better?
Posted 7/29/2015 5:00 PM (GMT 0)
Hi Ace - I don't know if I have Babesia - My LLND thinks not...and we have been focussing on lyme treatment (with some bartonella herbs), and will be focussing more on bartonella now.

But, just wanted to reassure you that it takes more time...and since it's only been a couple of months...that it normal...you're having some good days...and that's great!
It's hard to be patient, I know...but hang in there...

Keep coming back to the forum...to read...and ask for support when needed. That's what we're here for.
Posted 7/29/2015 5:00 PM (GMT 0)
Everyone's experience with Babesia will be at least slightly different- it depends on a lot of things as to how long it takes to heal from any one of these infections. Things like how many other infections you have, what kind of a pathogen load you have of each of the infections (for example, it may be Babesia, and maybe it's Lyme).

The 1 step forward and 2 or more steps backwards is a very common way to explain how it feels, actually!

Are you detoxing a lot? Those with high pathogen loads, high toxin loads, and impaired detoxing pathways (from gene mutations or just from an overload) badly need to do all the detoxing that they can, and if you have a gene mutation, you will need to take specific supplements in order to work around those mutations.

These bacteria are slow to reproduce, and they are each on a different schedule - Lyme takes around 4 weeks to cycle, Babesia cycles every 4 days I believe, and I've forgotten right now about Bartonella - sorry! That could be part of what you are experiencing as well, as when they cycle, we usually have an increase in symptoms.

The tests that have been done in petri dishes to see how long it takes to destroy the bacteria are just that - done in a petri dish, isolated from any other thing that goes on in the body, like toxins, other bacteria and viruses and more. So those aren't very valuable numbers in reality.
Posted 7/29/2015 6:06 PM (GMT 0)
I've improved after a year on sida, alchornea and cryptolepis. Now I'm adding in artemisia. My infection is very long standing, which is why it's taking a while.
Posted 7/29/2015 6:17 PM (GMT 0)
I guess I forgot to add in how much time I spent in treatment for Babesia - LOL! I was in treatment for 12 months using a bunch of Chinese herbs - most of which I've been unable to find on my own.
Posted 7/29/2015 6:37 PM (GMT 0)
thank you all for your responses! I actually just typed a lengthy reply here a few minutes ago only to find out I wasn't logged in and when I did log back in, my original message was lost confused
but I wanted to say thank you for the helpful information! I take the good with the bad and just try to remind myself that I just have a dreadful disease and that I will get over it eventually. It's frustrating to have some good days followed by the bad, but I guess that's the nature of the beast.
Posted 7/29/2015 6:46 PM (GMT 0)
I don't know how long it takes to go away. I thought I was over it but when I started anti-malarials it started the babesia die-off.

I wish I had taken babesia more seriously. I switched from Malarone to Alinia and Coartem (they seem to be better for my infection than the Malarone was).

Dr.Schaller has written a lot about babesia. I think he is the top expert in it. Maybe look around and see what he has published recently.
Posted 7/29/2015 6:51 PM (GMT 0)

Traveler said...


The 1 step forward and 2 or more steps backwards is a very common way to explain how it feels, actually!

I totally agree. Very early on in treatment I felt so upset with setbacks. It's easier said than done but please don't lose hope that you're moving forward.
Posted 7/29/2015 7:22 PM (GMT 0)
I pretty much plateaued at 50% after 3 years of treatment including 16 month on IV. My LLMD thought we were battling a Mepron resistant strain of babs, so I weaned off the Mepron/zith and started going more herbal wth cryptolepis, then added sida acuta, and then phased over to CSA blend while still trying various combos of mino, Bactrim, Tindamax, and alinia; and two rounds of coartem.

Nothing was getting me past a 50% plateau. Then we took another hit at Bart with mino, plaq, and Rif that put me in herx hell for about 3 months then improved to 80%.

So maybe change up your protocol, you never know.
Posted 7/29/2015 9:48 PM (GMT 0)
Tickbite - that's a long haul. How did you know to treat with bart again? Just a hunch?

Did anything change at all on the Mepron? Or do you think you never even had Babesia?
Posted 7/30/2015 3:20 PM (GMT 0)
when you talk about the 'cycle' of babesia and lyme, are you referring to its life cycle? from what I've read about babesia is that it affects the red blood cells and that would most likely explain the constant feeling of light headedness and dizziness, but when I have the 3 or 4 good days on, followed by the 3 or 4 bad days of heavy symptoms, is it because the babesia is being killed? I'm trying to understand how long babesia is going to be in my system (symptoms since Sept. 2013)
Posted 7/30/2015 3:47 PM (GMT 0)
Babesia is a malaria like organism. Malaria is passed by the bite of an infected mosquito. You will have very severe symptoms (including drenching sweats) for a period of time and then be completely well for another period of time, then you start all over. So it is cyclical. Usually, the longer you have it the stronger the symptoms and the fewer good days.

A lot of people on the forum use Plaquenil. It's an antimalarial drug not an antibiotic. It's safe with only one know side effect, which takes a daily dose (200mg) over 5 years to build up enough for there to begin to be a problem (with vision). It is recommended that you have a specific image of each eye to start and then after a period of time the imaging is redone and the two compare. IT becomes detectable via the imaging long before it effects your vision.

I've been on it for 8 months and the thing I noticed first is the drenching sweats completely disappeared along with the pain on the bottoms of my feet. It was given to me (pre-lyme positive test) for joint pain. Until that time (decades), I had never had joint pain. It was excruciating. The joint pain is gone too.

Hope this info helps,
Kim
Posted 7/30/2015 4:05 PM (GMT 0)
Kim,
Thanks for the info; it does help! I've been on the atovaquone-proguanil since May, in addition to the Tinidazole and Rifampin. I had the sweats, but I wouldn't call them drenching, but I had the air hunger and weird chills and constant dizziness and light headedness. So how long does babesia stay in the body after medication?
Posted 7/31/2015 2:38 AM (GMT 0)
Sorry, I don't know. I'm learning all this myself. I understand malaria and made the connection when my doc put me on the Plaquenil.

It was actually the fact that I had to have the eye exams which brought up the possibility of Lyme. My diagnosis is Fibromyalgia. My eye doctor had been to a professional meeting with a lecture. The person speaking talked about it taking many years, and many doctors before someone asked if she had tested for Lyme. Knowing my history, she asked me the same question.

So it was the plaquenil that got me here. I just got my Igenex tests back last week. I've continued on the plaquenil figuring it is having an impact because for the first time in years I am not sweating every minute of the day.

What I can tell you is if you end up trying Plaquenil, you should search for the thread "Plauqenil and Safety". It has a link to the latest information about the vision issues.

Good Luck,
Kim
Posted 7/31/2015 3:32 AM (GMT 0)
For me, babesia has been an absolute nightmare. My first LLMD didn't think I had it because I don't have classic symptoms. I get hot flashes and chills, as well as this weird muscle thing thats hard to explain but is basically the worst feeling I can imagine. It makes me very anxious and unable to do anything except pace around the house, it's so uncomfortable.

I treated for a year before I figured out that babesia was my main issue. I had a herx from hell that lasted 10 days where I could do nothing except go on anxious, nervous walks outside. I was unable to sleep and would walk up to 15 miles a day out of just pure anxiety. It's very hard to explain.
Posted 7/31/2015 4:21 AM (GMT 0)
my primary symptoms are from babesia as i have that and lyme. the main symptom is the brain 'thing'. i tried zithro/mepron/artimisae and it worked a little but i quickly regressed so the doctor knew i had a more resistant strain and needed to go to a different protocol. i did a round of coartem which kick started the improvements and am pulsing Omnicef/Tindamax MWF. Been on this for 2 months and I'm definitely having longer better days and less bad days. The bugs are still strong enough to cycle every 2 weeks almost like clockwork (used to be strong every 7 days).

my doc says it takes a while and takes a toll on your psyche as you feel better and think you are never looking back only to get knocked on your butt harder than before and have to get up and go at it again over and over. takes a good mental attitude to tackle this.
Posted 7/31/2015 11:22 AM (GMT 0)
Yes, Babs replicates every 7 days and most folks can feel the 7 day and 14 day cycles. Babs treatment needs a minimum of 120 days, which is the life cycle of red blood cells. But most folks need to treat Babs for much longer time.


Girlie, yes, taking another shot at Bart after treating Babs for so long was just a hunch by my LLMD. I did have Babs too, and during my first round of Mepron weeks 4 thru 9 of treatment were herx hell, then improvement occurred.
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