I finally got my notes from my LLMD, and it turns out I had a borderline test for babesia duncani that my LLMD missed! LLMD did treat me based on clinical symptoms for babs, but only for a short while.
How are the symptoms of duncani different from microti? What are some of the symptoms specific to duncani?
Posted by blinkie (Member # 14470) on :
I think you aren't getting responses because no one really knows what is causing what. But, I can contribute.
I kicked erlichia and should be done with bart, after beating the hell out of it with hardcore IV abx. Also, treated a lot of lyme.
Here are my remaining symptoms, which I am attributing to babesia only. When I take babs meds, these things get better.
Night sweats chills hot flashes fatigue unrefreshing sleep poor stamina breathing issues
These are my remaining issues and I am currently on IV lyme meds, so I know they are babs only.
On the other hand, I don't know which strain i have. All I can say is that the year I was diagnosed (2007) I was tested for microti through labcorp(probably not a reputable test) and it was negative. So, I just assume I have duncani. Besides, mepron and other meds didn't kick it, and from what I read, this is consistant with duncani.
Posted by Wolfed Out (Member # 23727) on :
Which one is Duncani...WA-1? That's what I'm diagnosed with.
I agree with Blinkie. I learned quickly on here that everyone has symptom overlapping, ABX killing symptoms from other apparent infections, etc...
It's like no one really knows what we're shooting down.
But, I think I'm getting my Babs under control and my Bart has become worse...that's what I believe now, even though I thought it was the opposite last month. Continued skin eruptions, afternoon fatigue, and psych issues have given me reason to believe this.
On the other hand, symptoms that are related to my Babesia WA-1:
Vision problems (trails, floaters, sensitivity) Air hunger Chest pains Imbalance
Have been steadily improving..
That's the best answer I can give you.
Posted by BoxerMom (Member # 25251) on :
B. duncani is B. microti on steroids! Symptoms are worse and infection is harder to treat.
Two members of my Lyme group have B. duncani. Both report mental confusion, difficulty finding words, fatigue, joint and muscle pain, shortness of breath, sweating. (All symptoms may not be related to B. duncani.)
Classic Babesia symptoms are day/night sweats, air hunger/shortness of breath, fatigue, fever/chills, neck pain.
If you are not sure, please consider a round of Mepron/Zithromax. If symptoms worsen, you probably have Babs. I had almost none of the symptoms except the fatigue until I began treatment. Then I had all the symptoms.
I was positive for B. microti, I think through Fry labs.
Posted by Amanda (Member # 14107) on :
I read a study here not long ago that B microti was showing treatment resistanece.
Mepron/zith is considered the gold standard. But some people can't afford it (iff insurance doesn't pay)
And some people find something like larium is more effective.
Also, many LLMDs are noticing that you need to take Mepron at higher doses (2 tsp 2 x a day) for a year or more.
I think the term co-infection is misleading. It seems like they are harder to get rid of than the lyme!
Posted by Maradona (Member # 24552) on :
How much is zithro/malarone after insurance.
My LLMD told me that Malarone is beter than Mepron but you have to take right dose.
And it make sense because malarone has mepron on it and i think proguanil.
Posted by LymeCFIDSMCS (Member # 13573) on :
B. Microti on steroids is a great (scary!) description.
I got bartonella independently of Lyme and this probable babs, so I can sort out those symptoms (bart) fairly well, but then it's also possible I was infected with a second strain of bart when I picked up the Lyme and babs from a tick bite in 2007.
I did take 2 months (or 2 1/2) of Mepron but it really pushed me over the edge. I was definitely herxing -- or something -- and then a lot of events happened and I nearly died last year, and I went into some kind of respiratory failure and was using a ventilator to breathe. Looking back, I'm trying to figure out if it was the Lyme, babs, or bart that did it.
Right before that, I was having the worst drenching night sweats of my life. They were so, so extreme -- I had had them when I did take Mepron, a little bit, but not like this. I was so weak and my blood pressure was so low I didn't think I would survive that much fluid loss, honestly.
At that time, my doc ordered the Clongen babs panel, but I just read on the LymeMD blog that it doesn't test for duncani, so though it was negative, that was post-Mepron, and also long after getting that other borderline test for duncani that my LLMD apparently overlooked.
So when I found the test the other night I began looking up duncani, and found it can lead to severe respiratory distress and then death. Now I'm wondering if it was babs. IM Ceftriaxone helped me pull out, but I also added Cryptolepsis and Artemesia again I think, and maybe those did something. I still don't know since Lyme, babs, and bart could all cause this.
One has to be such a detective!
One symptom I have is a stupor-like state that feels different from another symptom I'd call more coma-like (in the coma-like one I can't move or speak except to speak in gibberish noises) that I started getting a lot with bart, generally after a seizure (I'll become unable to move/speak for awhile, but am conscious of trying to move/speak so it's almost like temporary locked in syndrome rather than coma, and then it passes).
The stupor-like state, though, is different -- I could move my limbs or speak but it feels like the blood in my brain is glue -- I have always suspected it's babs, as it feels like a variation on this completely blank brain feeling that people have told me is a babs symptom. Does anyone else with duncani have the stupor thing?
Posted by Lemon-Lyme (Member # 19229) on :
quote:Originally posted by Maradona: How much is zithro/malarone after insurance.
My LLMD told me that Malarone is beter than Mepron but you have to take right dose.
And it make sense because malarone has mepron on it and i think proguanil.
What dose does your doctor recommend?
You can look up prices at Costco, before insurance. Only way to figure out how much after insurance, is to find out what your particular insurance pays for. Usually, it's just a co-pay.
Posted by Wolfed Out (Member # 23727) on :
LymeCFID,
Your "stupor-like" state is very similar to how TF would describe her weekly Babesia flare-ups.
It was advised by her LLMD to encompass this flare-up time by pulsing in Artemisinin around it.
I recommend contacting TF if you want to know more.
I see you've been around a while, and maybe you've seen this information. Thought I'd mention it in case you haven't.
Posted by pj1954 (Member # 11722) on :
the proguanil keeps the babs bacteria from reproducing once you can kill it .
I still fight sweating ,shaking and extreme fatigue with any heavy physical exertion !
im on zith and malarone with artemesinin as an added kicker !
Posted by Starphoenix (Member # 2402) on :
I have Babs again, and I'm pretty sure it's Duncani. It's behaving differently:
I have severe air hunger, and it hasn't abated in the least after two months of treatment. I'm pretty sure my anemia has worsened.
I have drenching sweats, CONSTANTLY, when I sleep or rest.
I was more prone to shaking chills on microti. With both, loss of appetite, nausea, fatigue.