Topic: Has Bart h. led to bacillary angiomatosis for anyone here?
Melanie Reber
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posted
I am beginning to believe that my 'mystery' subcutaneous nodules that seem to come and go, flaring only when I relapse, MAY be related to or may actually be a secondary bacillary angiomatosis infection. It all finally makes a lot of sense timewise and symptom wise.
Do any of you have experience dealing with this manifestation of Bartonella? And if so what was your outome?
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Posts: 7006 | From Colorado | Registered: Mar 2003
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pamoisondelune
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What is angiomatosis?
Several years ago a little wart appeared on my nose; except it wasn't a wart; my doc said it was a hemangioma.
I read on the internet that there is a kind of Bartonella in South America that causes hemangioma on the nose. But i've never been to South America!
It has been stable for years and hasn't got worse.
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Melanie Reber
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The first time I remember noticing the subcutaneous nodules was around 2006. I had just moved to CA and my cat disappeard for almost a week. When he returned, he was very skinny and covered in fleas.
I dealt with that infestation for several weeks, but shortly after that- we both became very ill. I really wasn't back to 100% from 3 years of aggressive treatment, but was doing so much better, so I thought it was just a relapse due to the stress of moving, starting a new job, etc., etc.
However, I began to experience many symptoms that were new to me at the time and sought out a new LLMD in CA.
We tackled all of the other symptoms with more aggressive therapy, but the nodules were never addressed and never really went away, they just lessened in size and pain intensity. This continued for several years with an flare in pain everytime I would relapse.
So, it has been an ongoing issue with me for about 6-7 years now. I am REALLY good at ignoring things, so I tend to ignore this as well when it seems like other more prominent and overt symptoms need to be addressed.
But if this IS a secondary bacterial infection, it would explain why I never feel quite 100% even after really intense and aggressive therapy.
I would like to find someone who will biopsy the most painful one so we can find out if the infection can be cultured and confirmed... but I'm just not sure where to turn to for that. And I have read that it is difficult to culture this bacterium, so I can't just go to anyone and ask them to do this sort of specialized lab work.
Any suggestions?
Posts: 7006 | From Colorado | Registered: Mar 2003
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Melanie Reber
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Thanks Manybites. that is a helpful link with good basic info.
Pam, I am never surprised when I hear that someone has contracted something that 'only' can come from somewhere they have never been. Remember... people and animals that are hosts or that carry vectors travel!
In fact, pretty recently, an airplane was grounded when several ticks were found on it.
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poppy
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Maybe you should consider Galaxy Lab for a bartonella test, as they are currently the best, I hear. Wondering if a biopsy is necessary to do a test....blood test would work too?
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Melanie Reber
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Yes, I am interested in using Galaxy lab, but do not know where they are located- any information there?
Posts: 7006 | From Colorado | Registered: Mar 2003
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Melanie Reber
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Thank you for your help Manybites. I have been treating agressivily off and on for about 10 years so unfortunately I am well aware of reaction intensities!
I completely agree that protocols need to be at high doses for long periods of time... and I also agree that if the infection is a long standing one and the loads are high, you will need to start out slower and build up to a bactericidal level.
Posts: 7006 | From Colorado | Registered: Mar 2003
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poppy
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If you are going to a lyme doc, he/she will be familiar with this lab. And, as you know, tests have to be ordered by a licensed medical person. Not sure who all this covers, probably varies by state.
[ 08-18-2012, 07:54 PM: Message edited by: poppy ]
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map1131
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Since '05 Lone Star nymph bites I've had many bartonella issues. Most prominant was GI issues. But soon after skin eruptions started happening.
When my PCP (somewhat lyme literate) seen my skin eruptions, he told me most skin issues come from the gut. They are connected.
I was then able to connect it all to bart. I had been using rife for bartonella but it wasn't until I seen these 2 freqs that I was able to knock it down. Freqs 832 and 357 although hard for me to do, have been the answer to my skin eruptions.
In no way shape or form did my eruptions look like those horrible pictures I seen on some sites. TBTG
So I guess my tx with a year of rifampin or levaquin did help in some ways. But it wasn't until I actively treated with rife that the skin eruptions went into hiding.
Melanie I hope you find some tx for yourself that works.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6405 | From Louisville, Ky | Registered: Jan 2002
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canefan17
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It's very common in those with HIV (because the Bart runs rampant)
How come HIV is never talked about on lymenet?
Is it possible some of us have that suppressing our immune systems beyond belief?
We shouldn't need years and years of Bart treatment if we had a responding immune system to suppress it.
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poppy
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Lyme also disregulates the immune system.
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Melanie Reber
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Thanks so much everyone! I'm trying to get an apt in DC so I know I will be under expert care.
Posts: 7006 | From Colorado | Registered: Mar 2003
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