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Old 08-29-2006, 04:00 AM   #1
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Question for 6B or any other Bartonella sufferer.

Hi Mickie,

Sorry to bother you when you are obviously going through a bad, bad time but its just a quick question.

I have just been diagnosed with Bartonella and have been prescribed abx for 2 months as a trial. The question is, do you suffer a herx reaction when killing off the bartonella as you do with the lyme.

I need to be prepared!

Hoping that you are having better days.

Janet

 
Old 08-29-2006, 06:45 AM   #2
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Re: Question for 6B or any other Bartonella sufferer.

That is a fantastic question. I don't know the answer! I have bartonella, but didn't find that out until much later, and I was herxing from the lyme all along so I don't know how to differentiate between the two, they just overlapped for me.

I guess you would though. Herxing is from having an overload of toxins and if you kill bartonella, you must have something dead and toxic in you that has to get out, so that would make you herx, right? Just a theory.

 
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Old 08-29-2006, 06:59 AM   #3
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Re: Question for 6B or any other Bartonella sufferer.

Hi Janet - no trouble at all.

I have some bad days, I have some good days - this recovery sure is a roller coaster ride!

I tested negative for Bartonella twice but my LLMD suspected it was there. She muscle tested me for Levaquin (an antibiotic used for Bart. infections) and I was "good" for it. (Not sure if I believe in muscle testing - but she's the boss)

I started the Levaquin and almost immediately I felt a difference. Every 2-4 weeks, I break out in a rash. My old familiar Lyme rash came back with a vengance. I even had a new Lyme rash pop up on my other leg - maybe I had two bites??

The other rashes are strange and hard to describe: not itchy, some look like bruises and other spots look like scratch marks. I've had 3 rounds of these rashes come and go. And for me - thats awesome news as this is the first time I've had classic Herx'ing going on.

Every time I go through a round of these rashes, I like to think that I'm killing more bacteria - yeah!

The Bartonella rashes aren't a bother - they just look weird. My Lyme rash is a bother as it itches like mad!

The only other symptom that I have is the worst - the PAIN! The bottoms of my feet, my muscles in my legs, calves, thighs, knees - ugh - its bad. Somedays even my hands hurt.

I also try to think of this as a good thing. The pain is evidence that I did indeed have a Bartonella infection and that the medicine is working.

Its been a few months and I have to say that I FEEL BETTER than before I started the Levaquin. My mind is more clear, my memory has improved, etc.

There are risks with Levaquin, and I'm keeping on the lookout for any of those.

I've been on Doxy too - for about 11 months. I noticed tiny differences with it - but nothing like the improvements I've had with Levaquin.

I know that most LLMD's believe that a co-infection needs to be killed first, before the Lyme can be completely killed. That may explain why I've been on Doxy for so long with little improvement.

The one question I have is ... how long does it take to kill a co-infection? A few months, a year? I keep forgetting to ask Dr. E about that.

I hope I addressed your questions - feel free to ask more. We'll get through this Bartonella together.

Peace and health to you across the pond.

 
Old 08-29-2006, 07:54 AM   #4
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Re: Question for 6B or any other Bartonella sufferer.

I think I'll be posting in this thread soon. I have not been dxed yet, but I have the Bartonella rash (or at least I think so). Hopefully I'll find out soon.


 
Old 08-29-2006, 08:01 AM   #5
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Re: Question for 6B or any other Bartonella sufferer.

Forgot to mention ...

I have swollen feet/ankles - big time! It can get so bad that they look like cartoon feet.

I showed my LLMD and she said that it's not water - its lymph. Because I am in so much pain, I hardly walk around at all. By not moving my muscles, my lymph was not being pushed out of my legs and it accumulated in my feet.

I am working to relieve this (rebounding, skin brushing, detox baths, foot pads) and its going down a bit.

Don't know if this will happen to you - but don't be alarmed if it does.


Last edited by 6Blues; 08-29-2006 at 08:02 AM.

 
Old 08-29-2006, 08:10 AM   #6
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Re: Question for 6B or any other Bartonella sufferer.

Is a scratch-like rash a clear indicator of Bartonella? Like I've stated in other threads, I believe I have Lyme, and I have a scratch like rash running down my back. Like you said, it is not bothersome, it just looks weird.

 
Old 08-29-2006, 08:15 AM   #7
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Re: Question for 6B or any other Bartonella sufferer.

Bartonella definitely looks like a scratch. If a person has a co-infection - they defintely have Lyme.

Apologies if you've told me and I forgot - but are you seeing an LLMD? Have you been tested at Igenex or some other lab? What tests have you had?

Be sure to have someone take a picture of your back.

What are your symptoms?

Peace and health to you.

 
Old 08-29-2006, 08:31 AM   #8
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Re: Question for 6B or any other Bartonella sufferer.

Hi. I am going to the doctor on Wednesday, and she'll either A)Order up some blood tests B)Refer me to an LLMD (as she is not) or C)Both.

My symptoms are cluster headaches, blurred vision at times, slight weakness in legs, joint popping/cracking, neck soreness and stiffness, sore throat since early July, and lightheadedness that comes and goes.

 
Old 08-29-2006, 08:39 AM   #9
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Re: Question for 6B or any other Bartonella sufferer.

Ok, thanks for the update on where you're at! My memory is like swiss cheese somedays.

Good you are seeing a doctor. You can order the test kit fron Igenex right off their web site - and take it with you to your appointment.

I hope when you do get tested, your blood is sent to Igenex. I don't have stock in them or anything (LOL - I don't play markets!) - I only know that my blood was sent to local labs here in NJ twice and came back negative for Lyme, which cost me nine months of hopping from doctor to doctor searching for a daignosis.

Only when I saw a balance therapist out of desperation and begged for her help (I was walking into walls) - did she sit down and listen to my long story - look at me and said "You have Lyme disease."

She recommended a good LLMD and I began treatment. I feel much better than I did last year.

Don't forget to get tested for those ornery co-infections!

Let us know what happens, Ok?

p.s. My LLMD is in Jackson, NJ. If thats not too far of a haul for you - she's an awesome doc.



Last edited by 6Blues; 08-29-2006 at 08:40 AM.

 
Old 08-29-2006, 12:35 PM   #10
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Re: Question for 6B or any other Bartonella sufferer.

Hi there. Im not sure if my insurance covers Igenex (my parents insurance, really) My blood usually gets sent to Sunrise Labs here in New York. I was on their website and they recently got new lyme disease tests and stuff like that. Out of 22 patients, 96% were tested positive(I think it was 96%, from what I remember). I don't think that they test for Bartonella, only one co-infection, that babeiosis one (spelling, I know). My sister was tested positive for lyme I think at the same lab about 6 years back. Well, we'll see!

 
Old 08-31-2006, 03:25 AM   #11
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Re: Question for 6B or any other Bartonella sufferer.

Thanks Mickie,

I knew you would have an answer. The good news is that you feel better following treatment. I already have regular bouts of severe pain as you describe, but I will put up with them getting even worse if it is killing off the disease. Swollen feet sound a bit horrific - perhaps the redistribution of weight will stop me from falling over!!!

I have had some peculiar rashes over the years. When I first became ill, and was on my second round of hospital departments having every test under the sun, I kept politely pointing out the current rash which was repeatedly ignored by a whole range of specialists.

I have a clinical diagnosis of bartonella after my LLMD discussed my symptoms with your Dr B (very humbling) and I have been prescribed Levofloxacin which sounds like it might be the same drug as you are taking - not sure if the names are the same over here.

At the same time, my mitochondrial function test has come back with very poor results. I am only storing about half of the energy my body produces and my "energy distribution system" is only working at a third of what it should be. So it is no wonder that I am so tired!

To repair this I need to take a cocktail of supplements for three months.

I think on refection, it might be better to at least have got this underway before starting on the Levofloxacin, so that perhaps I can cope with it better.

But I can't do that yet because they didn't include the information on the supplements with my test results and I have had to ask them to send it out again, Yet more delays - aaaargh!

Never mind, once the mitochondrial function is in order and the bartonella crushed, we can start on the lyme disease!!!

Many thanks for the response. We will beat the beggar (eventually).

Janet

 
Old 08-31-2006, 06:42 AM   #12
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Re: Question for 6B or any other Bartonella sufferer.

Hi Janet.

I like your plan. I bet you feel as if you have to take a herd of elephants across the Alps to defeat Rome. But at least you have a plan and thats something.

I always feel better when I have a plan of action against this stupid disease.

Keep up the fight and let us know how you do at each little step.

The Levafloxacin sounds real similiar to Levaquin. I hope it does the trick for you.

I keep forgetting to ask my LLMD about that mitochondrial function test - thanks for the reminder.

Peace and health to you.

 
Old 08-31-2006, 10:37 AM   #13
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Re: Question for 6B or any other Bartonella sufferer.

Okay. My doctor had to cancel yesterday, so I am going to a doctor today at the same medical group at 5:15. I am printing out a picture of a bartonella rash that I found on a lyme disease website. We'll see how it goes. I'm kind of nervous.

 
Old 08-31-2006, 11:46 AM   #14
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Re: Question for 6B or any other Bartonella sufferer.

Good luck Marconis and let us know what happens, Ok?

 
Old 08-31-2006, 01:34 PM   #15
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Re: Question for 6B or any other Bartonella sufferer.

Will do, and thank you.

 
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