Topic: I FINALLY have an answer and I'm SO happy!!!
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Hi all.
I went almost an entire year not knowing what has been wrong with me. I had a western blot done and of course it came back negative. It actually only had band 41++ IGG. So that was very iffy. By that time I was seeing an LLMD so he was treating me anyway because I have all the symptoms.
It's been hard though because not knowing for SURE what's really wrong and not having something TANGIBLE is so hard. I've been so scared and depressed that it may have been something other than lyme or co-infections.
Anyway, I had the Dr. F's lab done. And I got an answer! I've been praying so hard for an answer and I have one!
I have Bartonella. I know it sounds crazy I'm so happy to have it, but I'm really just glad I have an answer! This means I'm not crazy. I am sick. And now I FINALLY have an answer. We NEVER suspected Bartonella -- I don't even know the symptoms. Can anyone list those for me?
Here's my picture of positive Bart from F's Lab:
I'm SO HAPPY. But now I'm also scared. How bad are Bart herxes? When I went to a duck, he had put me on Doxy and I know I herxed from that. And now my LLMD is putting me on Doxy and Rifampin and Biaxin at different times/days.
I've never been on Rifampin. I've been on Biaxin now for a month.
I'm afraid of the herx I might have. I know that since I felt terrible on Doxy alone, I'm afraid of what I'm going to feel with Doxy and Rifampin!
Any feedback?
Otherwise, I'm so happy. I'd dance if I could. I HAVE MY ANSWER!
Now just to get through the herxes to come.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
How do you get a test through this lab? Im like you where I want to know for sure.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by LisaS: How do you get a test through this lab? Im like you where I want to know for sure.
I had the blood taken at my LLMD and they sent it there. The labs are located in Arizona.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Okay thanks disturbed, I am glad you got the proof you needed. This disease is so frustrating. Especially since we gotta be scared we're not even treating the right thing!!
posted
This is fascinating...is that pic your own blood under a microscope?
How much does this test cost? Was you bart igm/igg negative thru igenex? My bartonella IGG came back positive and I am currently on Rifampin/Doxy after 2 months of Levaquin. Not much reaction to Levaquin. 4 days into Rifampin/Doxy I developed a fever, nausea and my feet burning was more severe. Feels like a caught a flu..or maybe a herx.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
AWESOME news!!
NOT that you have bart, but that at least you KNOW!! I'm sure you feel great relief!
I'm presuming you tested negative for it earlier?
You are gonna kick some bart butt!!
New levels of wellness await you!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by chamade: This is fascinating...is that pic your own blood under a microscope?
How much does this test cost? Was you bart igm/igg negative thru igenex?
It's a pic of my blood smeared and dyed.
The test was expensive. I think it was around $400.
The bart on my igenex came back "Not Detected".
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
The picture doesn't look clean, so it's hard to tell which is bug, which is not.
Posts: 1078 | From Fairland | Registered: Apr 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by Dave6002: The picture doesn't look clean, so it's hard to tell which is bug, which is not.
I'm confused. What do you mean? Well, it's definitely Bart.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
my bart test came back neg, but there are so many diff strains. i have all the symptoms so my dr is treating me anyway. i also have lyme and babesia, so I dont know what symptoms are from what.
but i have weird rashes. big long ribbons, look like scratches. spider vein looking ones, but red. i aso have little red dots on my legs, but that might be the babs.
i think the swollen glands are from the bart. i have them under my arms and on neck under chin. sometimes they are so sore i can feel them under my arms when i put my arms down at my sides, and in my neck when i look down.
i also resond to the rifampin every week. i get flu-like muscle aches, and it goes away after i been on it several days.
edited to say the swollen glands are from bart, not babs
[ 15. October 2007, 11:03 PM: Message edited by: roro ]
Posts: 615 | From maryland | Registered: Oct 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by roro: my bart test came back neg, but there are so many diff strains. i have all the symptoms so my dr is treating me anyway. i also have lyme and babesia, so I dont know what symptoms are from what.
Thank you for your feedback.
I'm just so afraid. I know I have to get worse before better, but herxes scare me in that I don't want to feel like I'm dying again. :-| That is the scariest.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Rifampin will kick the Bart, but it is one tough drug. Start very slowly and build up to the standard dose of 600mg. Of course, check with your doctor first.
The first few herxes will be rough - but if you pay attention and track your symptoms in a journal, you should find yourself feeling a bit better after the first 4 mos.
I don't quite understand the Biaxin and Doxy with it if you only have Bart, but hey I'm no doctor. I took it with Flagyl to hit cyst form of Lyme.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Rifampin was probably one of the hardest meds I've taken thus far.
I tried levaquin, but it was a no go.
I had to increase magnesium on rifampin as well as diflucan.
Rifampin lowers the effectiveness of diflucan.
I had the worst yeast on rifampin despite rigid diet.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Dave6002
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Member # 9064
posted
I am confused too.
Can you see almost every red blood cell has multiple dots on its surface?
Are they all Bart?
Also almost all red blood cells are deformed, indicating that this is not a good blood smear.
Posts: 1078 | From Fairland | Registered: Apr 2006
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quote:Originally posted by roro: i think the swollen glands are from the babs. i have them under my arms and on neck under chin.
That is usually bart.
Congrats, disturbed! I hope the treatment goes well. I agree with Geneal that Rifampin is one tough drug. Very rough for me...lasted 5 days on it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tailz
Unregistered
posted
What's the name of the lab in Arizona?
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
--------- quote: "Also almost all red blood cells are deformed, indicating that this is not a good blood smear." ------------
Actually, several regular blood tests I had done years ago - over a couple year time period came back that the "size and shape of RBC (red blood cells)" was irregular or mis-shapen.
But the doctor never followed up on it, although i asked about it. Now, I've asked several times for such a test to see how it looks, but I'm told the labs don't run a test on the size and shape of cells.
So, if they are irregular, that may be a diagnostic tool. ?
---------
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
thanks Lymetoo, I meant bart for the swollen glands! I edited my post.
I have been on rifampin for almost two months now, and compared to how I felt before, I am better. each week gets easier.
Posts: 615 | From maryland | Registered: Oct 2007
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bettyg
Unregistered
posted
congrats, you finally have a CORRECT diagnosis, a name to learn about, and to kill it off inside your body.
was he $400 for BART only or the main 3 co-infections: bart, babs, and erlichia? i need to update my newbie package with accurate figures.
thanks for your help and posting this.
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by bettyg: was he $400 for BART only or the main 3 co-infections: bart, babs, and erlichia? i need to update my newbie package with accurate figures.
It was for all three co-infections, but the only thing that came up positive for me was the Bartonella.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by Dave6002: I am confused too.
Can you see almost every red blood cell has multiple dots on its surface?
Are they all Bart?
Also almost all red blood cells are deformed, indicating that this is not a good blood smear.
I don't know how to read it. I don't care if I know how, I'm just glad I have an answer. BUT what with the way you're talking about it, you're making me afraid the diagnosis was a mistake.
Let me be happy about this. It's the first answer about my health I've had in a year.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I don't think there is any question you have coccobacilli attached to your RBCs. I did a quick google and your picture matches. If the lab interpreted the pattern as bartonella, I assume they know what they are talking about.
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