Topic: Trying to convince myself I don't have Babesia
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I don't know if my babesia test done over 2 years ago was positive or negative. I am going to check on that at my next LLMD appt. I treated with Malarone for 2 months and that was it. Not sure why I treated at all; back then I was so sick I didn't ask that many questions. Brain fog!
I have never had typical babs symptoms. And there could be other explanations for the symptoms that I do have...........
I don't have night sweats, your typical babs symptom. But I do have pitt sweats. Not very often, maybe a few times a week my pitts will suddenly out of nowhere be wet and stinky. At one point my LLMD told me this could be a lyme symptom, so I put babs out of my mind after that.
I also don't have typical air hunger, but I do occassionally feel like I have to work hard at getting enough air. I have attributed this to being so out of shape from being ill so long and not being able to move around. I do believe that is a reasonable cause for the lungs not working up to par.
I also never run a temperature, which I believe is also a babs symptom. My temp is always low which points straight to Lyme.
Now I am over 2 years in treatment and I have improved in most areas.... like my pain level is way better now, fatigue is only bad after I exercise. My constant headaches are less and less. Brain fog is greatly improved. So why am I not feeling at least 80 to 90% better???
Another symptom I have is I feel like my throat is closing up or is very tight. This was an original symptom and is one that is hanging on. I do have times where it clears for a while. Then out of nowhere it comes back. It along with fatigue and increased pain will re-surface after I exercise.
I also have heart palpitations. Also an original symptom. I actually had palpitations well before LD due to Mitral valve prolapse; but the palps became much worse after LD. I have them every day at some point. So don't know if its still related to lyme or if its the old MVP kicking in.
To me most of these symptoms could very likely be lyme or bart.
I have made progress to a point, but can't seem to get back to feeling normal or close to normal, so I have now started to question Babs as a possibility. However, I keep thinking thats its probably not babs and that I just need to keep treating lyme another year or so and I will keep slowly improving until I finally feel normal again. I don't want to treat for babs if I don't have it.
Oh and my LLMD said this to me when I first started treatment......he said "you might have a partial immunity to babs". What does that mean? Can you tell that from a test? Also do these symptoms sound like babs or more like lyme or bart?
posted
I didn't have the classic Babs symptoms either -Just fatigue which could come from Lyme too.
So even though one of my many tests was positive for Babs back in the mid-90's, I was never treated back then. Even so I got a six year semi-remission but then relapsed horribly in 2006.
Problem for you is without the positive you are probably reluctant to treat with Mepron or Malarone as I did. They are so expensive and who wants to put drugs in our bodies when they are not needed?
I am off Malarone now and on Bactrim and Artimisin which are supposed to get at Babs too. Maybe ask your doc about those drugs rather than going right for the $$ ones.
Partial immunity? Sorry, I have no idea with that one.
Posts: 472 | From New Jersey | Registered: Dec 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Thanks Lymetoo!.....fatigue has been a huge issue for me too, but it has gotten a good bit better; but it still flares bad after exercise. For example I walked on my treadmill yesterday and now today I am completely wiped out. Feels like I was run over by a train.
The "partical immunity" thing.....I am just going to have to ask my doc what he meant by that. How would he figure out something like that?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Cockapoo, thanks for the info! I did do 2 months of Malarone and at the time my insurance paid for it. I have different Ins now though. So that is a concern. And I don't want to put meds in my body that I might not need; but I do want to get better. I also don't want to relapse.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
That sounds like it could be babesia, suthern.
When I was treating for babs I had the worst fatigue in the world.
I finished off the babs with zith and artemisinin... very doable for you! I never even took mepron. Mostly clindamycin and quinine...but wish I had taken the art and zith way earlier!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Lymetoo, how much zith and artemesinin did you take, and for how long? Did you pulse the art? Did you take clindamycin and quinine at the same time as the zith and art or at another time?
I know most people say to pulse art, but I feel like I lose ground when I do that, so I'm torn.
Posts: 975 | From California | Registered: Apr 2007
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posted
I have very slight air hunger and occasional "warm" flashes. 2 of my LLMD's did not think I had babs. (One of these was your LLMD's PA, I think.)
I felt better on abx, but haven't improved if I go off them. I've been treating for 2 years.
My 3rd LLMD ran the coinfection tests and I got a slight positive for babs. So I believe I have had it all along.
My daughter has the severe fatigue and isn't improving with 2 1/2 years of treatment. My LLMD (and soon to be hers) thinks this is babs.
So, IMO, babs treatment is worth trying.
Posts: 984 | From US | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had babs and didn't have any of the symptoms of it.
Got a positive on Igenex test that looks at the red blood cells and actually sees the babs in them, so there is no doubt I had it.
When I started treating it, wow, did I get the weekly flare! It was unbelievable.
So, just want you to know that you can get virtually symptom-free and still have babs. I did. Also, you can have babs without any babs symptoms. I did.
Any time I stopped antibiotics, in 2 weeks I was as sick as a dog, mentally and physically. In bed, practically out of my mind. I now believe that was thanks to not treating babs. (But, I also had bart and had not been treated for that either. My first lyme doc just treated me for lyme.)
I was treated with Bactrim DS and pulsed artemesinin to get rid of babs. They are not expensive as I recall.
Rather than spend another year treating lyme, then possibly relapse due to an untreated coinfection, I would want to give babs treatment a try right now. If treatment causes you a flare, like it did me, that is your answer. If it gets rid of any symptoms, that is also your answer. It shouldn't take more than a 2 month try to get your answer.
You might be very happy that you explored this!
I have never met a person with lyme who did NOT have babesiosis also. Never.
It has now been over 5 years since I completed my lyme treatment and I am still symptom-free.
Wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I say strong chance of Babs.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Thanks for the info. I know it seems weird that I put this out of my mind for so long; but most of my symptoms have been so lymish.
You all have made me see that I do need to discuss this with my doc. I don't think its that he is ignoring it. I did treat it briefly in the early stages of treatment; and hubby recalls him saying that we might re-visit it again later. Maybe later is now!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Lymetoo, how much zith and artemesinin did you take, and for how long? Did you pulse the art? Did you take clindamycin and quinine at the same time as the zith and art or at another time?
I took Clindy/Q off and on over a period of at least 2 yrs. Then the 4th yr of treatment, I took Art and Zith for about 2 months. Symptoms went away.
I took whatever is the usual for Zith.. maybe 500mg?? and Art... whatever the bottle says probably!! Sorry, that was 6 yrs ago!!
I didn't pulse.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Sutherngrl,
Your symptoms sound very much like mine.
I've have now had 2 coinfection tests at MDL and both were negative for babs & bart.
There's not a doubt in my mind I have bart but I have a gut feeling I have babs too.
With those symptoms though, it's hard to convince my LLMD.
TF,
You said, "I have never met a person with lyme who did NOT have babesiosis also. Never."
Could you expound on that please? Hopefully with something I could show to my LLMD and say, "See here...."
Thank you, Sutherngrl for asking this question.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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