posted
Before I go IV I recently saw a new LLMD that suggested I give Bartonella treatment a shot. My old LLMD (that I may stay with) didn't suggest this and is planning on be doing a PICC if I don't respond to the Babesia treatment.
Can anyone out there w/Bart tell me what their symptoms were? Were they mostly neuro - esp. pain?
I'm tired of chasing coinfections if they aren't there and ready to do the PICC, but don't want to overlook anything.
Thanks,
jloisu
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
I have had Bartonella once. My lymph nodes swelled (one never went down) and I got something similiar to a very bad cold. But I was infected by a cat bite.
I am now on Cipro as preventative measures from another cat bite.
-------------------- Kara Tyson Lyme Disease Support Group Of Alabama--MobileChapter Posts: 6022 | From Mobile, AL | Registered: Apr 2001
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Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
I have tested positive for Bart in the past.
I hope someone comes along with the list I've seen. It describes many associated symptoms.
I know it can cause many neuro problems and skin rashes, gastro problems, too. That's all I know. I can't separate all my symptoms out since I have multiple infections!
I think it's worth treating for it if it's a possibility.
Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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lymeloco
Unregistered
posted
Is there certain places where one would contract babesiosis? I don't think I've been tested because I was told it is on the Vineyard.
Llmd said if I had the other two infections, that biaxin took care of those.
I could've been tested but don't know.
I know a friends mom had babs. but she does live on the Vineyard.
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quote:Originally posted by lymeloco: Is there certain places where one would contract babesiosis? I don't think I've been tested because I was told it is on the Vineyard.
I have babs, and I've never been 1,000 miles of the Vineyard. You can get babs from any tick, and I believe from any mosquito that carries it.
We did a poll on where people got babesia....but I was unable to bring it up. I think it got erased.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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I've heard that testing for co-infections is not any more reliable than testing for Lyme. So sad!!
You mentioned Babesia treatment. What are you taking & for how long? Babesiosis can be very difficult to deal with.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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liz28
Unregistered
posted
I had bart for years, and started getting better immediately with rifampin + ketek treatment. If there is any chance at all you have it, you have to treat for it. The symptoms can be interchangeable with Lyme, and even worse, they can be partially suppressed by Lyme drugs.
Without any treatment, bart begins as a relapsing fever that has neurological side effects: disorientation, mood changes, difficulty with reading, concentration, mild attention deficit disorder. As it progresses, you get splitting headaches, swollen lymph nodes, sore throats, shin splints, body aches, severe neurological disturbances, severe ADD, insomnia, extreme fatigue, scratchy eyes, thyroid problems, blood seeping continuously from your nose, and eventually psychosis. Yes, you read that right.
I've been thinking about a PICC line as a last resort for the most hard to reach Lyme. With bartonella treatment, however, I went from being almost completely disabled by relapsing fever and fatigue to 90% remission in a couple of months. I still have mild symptoms of everything, but at least I can hold down a job and exercise again. Although I always had one personality while I was sick, I had lousy impulse control and would get angry over nothing. The final destination would not have been pleasant.
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I have only been doing Babs treatment for 1 month now. No matter what, IV or not my LLMD want me to continue that for at least a total of 3 months.
As for Bartonella, I think it is a long shot. But most of my main symptoms are neuro w/vasculits on my SPECT.
Liz28 - I understand what you mean - I don't see my final destination as pleasant either if I don't start making some headway here. That is why I'm trying to decide if I should treat Bart. before IV or not.
Can they treat Bart. while on IV? Can Bart be transmitted any other way? My LLMD said the only confirmed case he treated was from a cat bite or something like that? Does that make sense?
Kara - you said you were infected by a cat bite right?
Thanks,
jloisu
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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I have lyme and Bartonella and I have never been bitten by anything other than a tick...
As to the symptoms mine where all neurological. Thats typical of bartonella.
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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posted
There should be some physical evidence that you have Bart. This is what Dr B says are the signs and syptoms of Bartonella :
BARTONELLA Possibly the most common tick-borne disease in our area Gradual onset Rarely a rash- can be stretch marks, raised red dots, painful ``spider veins'' Symptoms- ``brain fog'', irritability, low grade fevers, sore nodules deep under skin, sore soles, enlarged lymph nodes
BARTONELLA RASHES Photos taken by Dr. Martin Fried, with thanks to the Lyme Disease Association
Red bumps- may form scabs Linear rashes- look like stretch marks Spider veins (often tender)
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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Hey Lymetoo - got the impression from your (and possibly soon my) LLMD that the testing for Bart. was worse that for Lyme so you treat based on symptoms and look for improvement to rule it out.
That appears to be part of his normal protocol per his handouts he has preprinted out and appears to give to all patients. Cover all coinfections at least once before IV.
Thanks,
jloisu
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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posted
Bart from a cat (henslae) is different than from a tick. Bart from a cat is a self limiting disease that can easily be cured with meds, bart from a tick bite is a totally different situation.
so I have read from research I have done on bart since I have it also. Bart can really do a number on your eyes, heels, shins, skin and electric shocks as well I think (unless that is lyme?)
So hard to know what is what.
Lymelady
Posts: 484 | From Fredericksburg, Va USA | Registered: Sep 2004
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posted
back at ya, joe! I thought maybe you were talking about the other LLMD. I'm sure Dr C has seen plenty of bart....but I know he rarely tests for it...just treats.
Lymelady, you are correct about the cat scratch, etc. Tincup used to have a great link on the difference. Anybody still have that link??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
jlo, yes. A cat bite. Years ago. Well before Lyme. I have actually had 3 major cat bites:
*** Actually, Bartonella henselae (cat scratch from a cat) HAS been found in ticks and Igenex has started testing ticks for Bartonella h.
Igenex Information: 290 TICK TEST by PCR for Bartonella henselae 87
Even the CDC admits that ticks can be infected with Bartonella henselae:
Ticks can carry bartonella h but also other strains of bartonella.
But with Bartonella h. , there does seem to be a differance in the severity by method of infection (tick bite vs. cat bite) even though both are the same strain. It is a mystery.
It could be that something happens during transmission--something that does not happen with the cat bite. What that something is...who knows.
-------------------- Kara Tyson Lyme Disease Support Group Of Alabama--MobileChapter Posts: 6022 | From Mobile, AL | Registered: Apr 2001
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posted
The presence of lyme spiroketes is what makes the difference I think, it is the bart in combo with the lyme that makes it so trecherous; these coinfections I believe are all horrible because they are hand in hand with lyme Lymelady
Posts: 484 | From Fredericksburg, Va USA | Registered: Sep 2004
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
Lymelady,
True. And I suppose the tick could be infected with muliple strains of bartonella, not just cat scratch...poor cats get the blame.
-------------------- Kara Tyson Lyme Disease Support Group Of Alabama--MobileChapter Posts: 6022 | From Mobile, AL | Registered: Apr 2001
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posted
Is there a link to the pictures of rashes you can get with bartonella? Those sound very familiar to some places I have gotten...would like to see the pictures. Thanks!
Posts: 114 | From USA | Registered: Sep 2005
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Kara Tyson
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Member # 939
posted
I never had a rash with it--more like ulcerations. The main thing is swollen lymph nodes which can get really really large.
-------------------- Kara Tyson Lyme Disease Support Group Of Alabama--MobileChapter Posts: 6022 | From Mobile, AL | Registered: Apr 2001
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posted
About 2 years ago my doctor said I went negative on bartonella, after testing positive for about a year. So I believe I had it for sure.
I am now experiencing the same symptoms exactly - that I had when I thought I was initially infected with lyme, but am re-thinking it was bart from this thread.
What I experienced was a bad cold, swollen lymph node on my right side of my neck.
This time I have the same, but with a mole on my back that is swelling and has black spots on it, and is sore.
I am thinking I have been re-infected with bart.
What I am wondering is - I have a dog that just scratched me. Would that give one bart?
But in reality - it may once again be a tick bite.
Or, perhaps I was never cured - because many red freckles remained after the diagnosis.
Being from a tick bite doesnt exclude the possibility of transmission from a dog. An infected tick can be living on an infected dog.
I have never heard of remission with bartonella but if you have a great immune system, who knows. Perhaps it is possible.
-------------------- Kara Tyson Lyme Disease Support Group Of Alabama--MobileChapter Posts: 6022 | From Mobile, AL | Registered: Apr 2001
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posted
I may be wrong but I thought it was actually the fleas from cats that transmitted the bartonella to humans and not the actual scratch or bite itself?
WV Hillbilly
Posts: 48 | From Five Mile Creek, WV,USA | Registered: Aug 2005
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posted
My twin sons have had the "Bartonella stretch marks" on their stomach and under their arms. Since they have been on minocycline the stretch marks have been disappearing. They were a deep red purple, but are now fading.
BTW-- they both had negative tests for Bart... Hmmmm. My opinion is, they don't have a test for every strain of Bart either.
quote:Originally posted by micul: BARTONELLA Possibly the most common tick-borne disease in our area
where is "our area?"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
Homeland,
It can either be from a tick, flea, or the actually scratch or bite.
The ticks and fleas feed on the animal that is infected and then bite others. It is believed that this is how a mother cat passes the disease on to her kittens--not by scratching/biting them.
-------------------- Kara Tyson Lyme Disease Support Group Of Alabama--MobileChapter Posts: 6022 | From Mobile, AL | Registered: Apr 2001
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
Lymesuz,
since cats arent the only ones who carry the disease I dont think it would be necessary to get rid of your cat.
-------------------- Kara Tyson Lyme Disease Support Group Of Alabama--MobileChapter Posts: 6022 | From Mobile, AL | Registered: Apr 2001
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posted
Can you be treated for Bart while on IV? I know one LLMD I am seeing uses Rifampin, while Dr. B. suggest Levaquin in his most recent treatment guidelines.
If I don't have swollen lymph nodes, am I in the clear? Is that an absolute must have for Bart? If so then why is my LLMD suggesting trying Rifampin? I have many of the other symptoms, but those do overlap w/lyme, but do have nerve pain shooting in my leg/foot.
Any thoughts?
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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posted
Yes you can be treated for bart while on IV for lyme, but it depends on which drugs you are combining. You said that you have been on babs Tx for 1 month. That isn't enough time to do much against babs. Minimum Tx time is 4 months if you're really lucky. More realistically 7 months or more. It depends on how resistant it is, and what strain.
It is possible to Tx babs and bart at the same time also. It might be a good idea to continue with babs treatment because if you do have it and stop Tx, you are allowing it to develope resistance. That will make it harder to get rid of later.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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- got the impression from your (and possibly soon my) LLMD that the testing for Bart. was worse that for Lyme so you treat based on symptoms and look for improvement to rule it out.
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