Topic: Opinion about Bartonella Being an Issue for Me
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Ok, unfortunately I'm an old timer here. lol. I'm looking for some feedback from those in the know about whether or not they feel undiagnosed Bartonella could be an issue holding me back from improvement. I bring this up because I recently saw a physician who is confident I have been grosly undertreated / not treated for this co-infection and I'd make great strides on Levaquin (which I'm very scared of).
I have never given Bart much thought and spend all my time thinking Babesia WA-1 and maybe Lyme. Here's some facts about my issues/testing results:
Symptoms: - severe fatigue, especially upon exertion - head pressure - relentless most days - eyes/nose pour clear liquid - off-balance feeling - mild air hunger, worsened greatly by exercise - occasional chills - light sweats rarely - eye issues - pressure/pain on left side - squinty - stomach problems - rumbling, pressure - sore ribs - dry heaving/nausea - never vomit - very stiff neck - back stiff too - bad anxiety - cannot handle much stimuli - unable to drive any distances - internal tremor type feeling - shaky often - elevated blood pressure - occasional palpatations in heart, but pulse under 80 most times - more like an awareness of my heart beat if that makes sense - frequent urination - Ear fluttening/pressure - major muscle spasticity - only relieved at all by Baclofen
Lab Results / Comments - CD 57 - taken 5-6 times - ranged from 28 to 72 at best - 5 of 6 times under 54.
- Bartonella Quintella and Henselae - tested 8+ times in 3 years various labs - NOT Igenex - negative all times
- Babesia Microti - always negative on all commercial labs - did not use Igenex
- Babesia Duncani - WA-1 - positive IgG titers through Focus Labs - ranging from 1:256 all the way to 1:2,048 - never tested at Igenex or other places
- Blood smears - all normal at hospital labs - Clongen showed whacky round motile organisms in WBCs. Of course, they couldn't explain what it was so useless
- negative on all titers for Ehrlichia, Anaplasma, and other TBIs
I have never taken oral Levaquin before. I'm desperate to make some headway with the neuro symptoms. Could this doctor be right about Bartonella. I have treated with different oral Abx / anti-malarials for several years on and off, but can't shake the anxiety and head issues.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Have you tried Rifampin or Mino for bart? I had good results from Mino, but not sure if it was treating bart or lyme. I had horrible herxes from the mino but came out of it feeling much better.
Posts: 323 | From Michigan | Registered: Sep 2006
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Try Rifampin-if you herx-then you will know. The shakey-tremor type feeling was definitely bart for me-gone now
Posts: 1276 | From maryland | Registered: Jan 2009
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
My LLMD had me run my hands down the side of my legs. If it hurt, it was supposed to be Bart, and yes it hurt like a dickens. So, once we clear the Babs, we will go after the Bart. Doc does have me on both doxy and biaxin and supposedly that will help with the Bart. Levaquin is probably next.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Oh, yes, the mighty Levaquin. It is better than Rifampin IMO. It is definitely worth a go, Seek.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
I heard Levaquin causes some hellacious anxiety. Is this true?
What if you already are prone to anxiety?
I've been offered it before, but turn it down for this reason.
Posts: 1142 | From South | Registered: Dec 2010
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I prefer levaquin to rifampin. rifampin was intolerable....too much for me.
If you load up on the magnesium, vitC, you may fare well. I have a hard time tolerating levaquin at 500 mg, so i usually do a week at 250 and then a week at 500..alternating.
levaquin will make you hurt like heck, per my LLMD..becasue it is getting at the stuff hiding out in muscle, joints and such.
sometimes people give up b/c they think they are having tendon issues....mine have not ruptured
now 'floxed' that is a whole other story...my brain is bad, so i really can't tell .
at some point, i guess we say 'what the hell' and dive in head first, 'cause living like this is unacceptable.
good luck in whatever you decide.
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
from one 'old timer' to another! Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Marcie, I have not tried Mino yet. I tried Rifampin for 4 days and had to stop. Severe reaction, which most likely was a horrible herx. I had bad, bad anxiety, head pressure, neck bothering me, etc. Bactrim DS did the same...stopped after 3 days. My old LLMD attributed the Bactrim response as a 'possible' allergic response, but looking back who knows?
Yeah Feelfit, my quality of life is pretty poor IMO so who cares I guess. lol. Not being able to drive anywhere, bad days every few, head squeezing constantly. Nothing to be excited about.
It sounds like this is a path to try.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Yeah Feelfit, my quality of life is pretty poor IMO so who cares I guess. lol. Not being able to drive anywhere, bad days every few, head squeezing constantly. Nothing to be excited about.
For me, I weighed the risk with the benefit and considering I was housebound, bedridden, had bad cognitive symptoms and couldn't eat solid food, the risk of tendonitis was worth it.
I had TERRIBLE pain on it. Epsom salts helped immensely. This was one time during treatment I did take painkillers. I called my LLMD and he said the pain sounded like a herx, not like tendonitis, so I continued on it.
I also took Humaworm at the same time, so there's no way to know whether the improvement came from Levaquin or parasite treatment.
It's all about the risk/benefit analysis of your situation.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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but one thing that stands out reading in here and listening is how many symptoms overlap and how hard it is to tell between some of these overlapping symptoms
plus how tests are so not reliable.
So trying to provoke a herx seems sensible.
Rifampin/Bactrim combo is helping me a lot with bartonella I had about a third of those symptoms plus way more brain and body neuro... and skin stuff.
I do not getting "I want to die" bart symptoms/herxes now but enough to know it is hitting and it cycles through feeling better than the last better by degrees.
and peristent neuro still there in legs. but is starting a little headway even on those four year persistent symptoms. I thought i was stuck with them forever.
Plus singificant herbals. Now i am thinking this is bartonella after all and will budge.
LLND wants me to do levaquin...but I said no right now.
six said it well...your own risk profile at any given point of relative quality of life.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i was afraid of levaquin-i had tendon pain with another drug like it
i got suicidal on rifampin but it was clearly a herx and therefore killing stuff so i had a friend watch me carefully and i lowered the rifampin dose but in 1 1/2 weeks i was on full dose and not sure how long i was on it but a lot of bart sx went away
six-that was interesting. i have had to make those kinds of decisons over the years
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I tested positive for Lyme and Bart. My doc treated for babesia with Mepron. never had a response, assumed I didnt have it. Rifampin was brutal for me, no more than 5 or 6 days. It's sad we have to check for a disease by hit or miss on Meds. Trying it was the only way to see but it's scary no matter how you do it. What was so bad for so many might be good for you. Good luck and feel better.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
If you load with magnesium and Vitamin C and other vitamins you will have no problems at all with levaquin just you will fill better.It was the best drug that I used without a problem .And I started on the full dose from the first day as I do with all meds when I start them. Feel better
Posts: 482 | From Nebraska | Registered: Feb 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I'm on Factive for Bart...it is a newer drug like Levaquin but you take it in pulses and it is supposedly better for yoru tendons.
So far so good. I have some mild mild tendon discomfort in my achilles. But otherwise okay.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Do you take doxy with flagyl at the same time? If I know correctly, doxy is decreased the effectivenes of flagyl I hope my information is wrong
Posts: 182 | From turkey | Registered: Jan 2008
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lymeboy
Unregistered
posted
I only have experience with Vipro, which is the same family of Levaquin. It has been very helpful. I take a lot of Magnesium. My Bart symptoms have all but disappeared over 4 months.
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