bartonella

September 17, 2002

MY DOC PUT ME ON DOXYCYLINE. BUT THIS WAS AFTER A FEW YEARS OF

ANTIOBIOTICS FOR LYME. GOOD LUCK

> What is the current treatment for Bartonella?

>

> Thanks for any info.

>

> Martha A.

September 28, 2004

I've been tested pos for bartonella. Currently I'm on Rifampin (600 mgs a day)

plus a weekly bicillin shot (its only been 2.5 weeks). Its hard for me to tell

which symptoms are specific to lyme and which are attributable to bartonella.

Overall my symptoms are mostly tingling head and face, neck stiffness, etc. My

doc thinks some of the head symptoms are bartonella. Is the Levoquin working for

you? So far I'm not sold on my current abx treatment although the past few days

I've been feeling a bit crappy so maybe I'm herxing. Let me know how things work

out for you.

Chris

-------------- Original message --------------

> Has anyone been treated for Bartonella?

> What are the symptoms and what are the recommended therapies?

> I was told I should clear up the bartonella infection with Levoquin?

> before continuing on a new course of antibx for Lyme?

> Thanks

> Deb

>

> Questions and/or comments can be directed to the list owner at

> -Owner

>

May 22, 2006

Typo ---- IgeneX showed me as positive for Bartonella not IGM.

--------- RE: [ ] Re: Protocol for treating Lyme?

> > >

> > > Thanks for your reply..Is anyone here able to STOP taking

> > antibiotics?

> > > Can

> > > we ever stop?

> > >

> >

> > May is Lyme Disease Awareness Month. Encourage awareness by purchasing the

> > book Confronting Lyme Disease: What Patient Stories Teach Us and sharing it

> > with family, friends and acquaintances. Please see

> > http://www.confrontinglyme.com/ for more information.

> >

May 22, 2006

Hi

Here is a link to a good bartonella article,

http://www.prnewswire.com/cgi-bin/stories.pl?

ACCT=104 & STORY=/www/story/07-24-2002/0001770121 & EDATE=

And this one is to a comprehensive lyme site. If you can book mark

the site as she is always updating the site and you can always find

the answer to your question there.

http://www.wildcondor.com/lymelinks.html

Now to your question the tingling sensation and the neurological

symptoms , anxiety etc are all signs of bartonella. However it is not

wise to rule out the other co infections. If you are lyme and

Bartonella positive have the other co infections ruled out as well.

The IV rocephin and the Tinidazole combo sound like you are on the

right tract. It does take time so be patient. Remember to keep your

probiotics well stocked and also learn to consume alot of water and

yogurt.

Here is a link to Q & A on Bartonella (copied from lymenet.org)

Author Topic: Bartonella Alert

Tincup

Frequent Contributor

Posts: 2234

From: The Moon

Registered: Jun 2004

posted 07 May 2002 18:09

----------------------------------------------------------------------

----------

Just finished this rough draft.. and am SOOOO tired of looking at

it.. I could use an Editor...

Anyone? THANKS! It has to be a ONE page handout.. so I can't add more

unless I take out stuff...

BARTONELLA ALERT

It is well known that co-infections may occur with Lyme Disease

relatively frequently. Patients with a

history of Lyme Disease who have incomplete resolution of symptoms

should be evaluated for Bartonella

infections. Bartonella is an intracellular, gram-negative bacteria

that can become chronic. Certain lab tests

may not detect the infection due to a variety of strains and the lack

of sensitivity of the tests. It is advised to

use both PCR and IFA methods of testing and not to dismiss the

disease due to negative tests when

symptoms are present. Various Bartonella species have been recognized

since the early 1950's.

Bartonella may not present in its usual form when additional

infections, such as Lyme or Babesia are

present. In addition, typical Bartonella lesions are not always seen

in patients, therefore, a diagnosis of

" fever of unknown origin " should alert a physician to consider

Bartonella. It is estimated that approximately

2/3 of the patients with Bartonella have a fever. Involvement of

practically every organ has been reported.

There are a variety of symptoms associated with Bartonella,

including, but not limited to, the following:

GENERAL: Fatigue, Restlessness, Combative behavior, Myalgias,

Malaise, Liver and/or Spleen

involvement, Abdominal pain, Infectious Mononucleosis-like Syndrome,

Granulomatous Hepatitis

BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection

and is fairly common in patients

with Bartonella. Note: Approximately 50 percent of patients who

develop Encephalopathy can be affected

by seizures (from focal to generalized, and from brief and self-

limited to status epilepticus). Headaches,

Cognitive Dysfunction, and CNS Lesions may be evident.

RASH AND LYMPHADENITIS: Erythematous papules (red splotches or

slightly raised red spots) may

develop. Such papules occasionally occur on the lower limbs but are

more common on the upper limbs, the

head, and neck. The papules may appear on the skin or mucous

membranes. Bartonella may also cause

subcutaneous nodules, with some bone involvement possible. The

nodules may show some

hyperpigmentation, be tender, fester, and/or be enlarged or swollen,

but not always.

EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision,

Flame Shaped Hemorrhages, Branch

Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates,

Parinaud's Oculoglandular Syndrome,

and Papilledema.

BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions

(softening of bone), Myelitis,

Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating

Polyneuropathy.

HEART: Endocarditis, Cardiomegaly.

Possible lab findings: The following may show up during standard

testing:

Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline

phosphatase level, elevated bilirubin, abnormal liver enzymes.

X-ray of the bone may show areas of lysis or poorly-defined areas of

cortical destruction with periosteal

reaction. Cardiomegaly may show up on a chest X-Ray.

Biopsies of lymph nodes reveal pathology often indistinguishable from

sarcoidosis. Reports of biopsies

strongly suggestive of lymphoma do occur.

Tests occasionally show an enlarged liver with multiple hypodense

areas scattered throughout the

parenchyma.

TREATMENT: You MUST consult a knowledgeable physician for information

on treatment for

disseminated Bartonella. Some of the medications which have been used

in the past have included

Doxycycline (with or without Rifampin), Ciprofloxacin, Erythromycin,

Azithromycin,

trimethoprim-sulphamethoxazole, gentamicin, and other macrolide

antibiotics.

------------------

My Tincup runneth over with whine.

ABOVE WRITTEN BY TINCUP ON LYMENET.ORG

There are many treatment modalities, I am a firm believer in HBOT (

hyperbaric oxygen ) and I offer it to lymies.

If you are ever interested here is my homepage link. Feel free to

contact me anytime.

best regards,

Sudylo RN/CHT

http://www.geocities.com/boejr1/index.html

I hope that this helps : )

May 22, 2006

Thanks . I have been tested for other co-infections and I'm well aware of

the time it takes. I've been on abx for about 2.5 years. This is my first time

with IV though. I've done:

Mepron

Flagyl

Rifampin

Cipro

Tinidazole

Minocin

Ketek

Biaxin

Bicillan shots

Theres prob a couple more but can't recall off the top of my head. Thanks for

the links and the reply. What seemed to work best for you?

in PA

-------------- Original message ----------------------

From: " Sudylo RN / CHT " <boejr1@...>

> Hi

>

> Here is a link to a good bartonella article,

>

> http://www.prnewswire.com/cgi-bin/stories.pl?

> ACCT=104 & STORY=/www/story/07-24-2002/0001770121 & EDATE=

>

> And this one is to a comprehensive lyme site. If you can book mark

> the site as she is always updating the site and you can always find

> the answer to your question there.

>

> http://www.wildcondor.com/lymelinks.html

>

> Now to your question the tingling sensation and the neurological

> symptoms , anxiety etc are all signs of bartonella. However it is not

> wise to rule out the other co infections. If you are lyme and

> Bartonella positive have the other co infections ruled out as well.

>

> The IV rocephin and the Tinidazole combo sound like you are on the

> right tract. It does take time so be patient. Remember to keep your

> probiotics well stocked and also learn to consume alot of water and

> yogurt.

>

> Here is a link to Q & A on Bartonella (copied from lymenet.org)

>

> Author Topic: Bartonella Alert

> Tincup

> Frequent Contributor

> Posts: 2234

> From: The Moon

> Registered: Jun 2004

> posted 07 May 2002 18:09

> ----------------------------------------------------------------------

> ----------

> Just finished this rough draft.. and am SOOOO tired of looking at

> it.. I could use an Editor...

> Anyone? THANKS! It has to be a ONE page handout.. so I can't add more

> unless I take out stuff...

>

> BARTONELLA ALERT

>

> It is well known that co-infections may occur with Lyme Disease

> relatively frequently. Patients with a

> history of Lyme Disease who have incomplete resolution of symptoms

> should be evaluated for Bartonella

> infections. Bartonella is an intracellular, gram-negative bacteria

> that can become chronic. Certain lab tests

> may not detect the infection due to a variety of strains and the lack

> of sensitivity of the tests. It is advised to

> use both PCR and IFA methods of testing and not to dismiss the

> disease due to negative tests when

> symptoms are present. Various Bartonella species have been recognized

> since the early 1950's.

>

> Bartonella may not present in its usual form when additional

> infections, such as Lyme or Babesia are

> present. In addition, typical Bartonella lesions are not always seen

> in patients, therefore, a diagnosis of

> " fever of unknown origin " should alert a physician to consider

> Bartonella. It is estimated that approximately

> 2/3 of the patients with Bartonella have a fever. Involvement of

> practically every organ has been reported.

>

> There are a variety of symptoms associated with Bartonella,

> including, but not limited to, the following:

>

> GENERAL: Fatigue, Restlessness, Combative behavior, Myalgias,

> Malaise, Liver and/or Spleen

> involvement, Abdominal pain, Infectious Mononucleosis-like Syndrome,

> Granulomatous Hepatitis

>

> BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection

> and is fairly common in patients

> with Bartonella. Note: Approximately 50 percent of patients who

> develop Encephalopathy can be affected

> by seizures (from focal to generalized, and from brief and self-

> limited to status epilepticus). Headaches,

> Cognitive Dysfunction, and CNS Lesions may be evident.

>

> RASH AND LYMPHADENITIS: Erythematous papules (red splotches or

> slightly raised red spots) may

> develop. Such papules occasionally occur on the lower limbs but are

> more common on the upper limbs, the

> head, and neck. The papules may appear on the skin or mucous

> membranes. Bartonella may also cause

> subcutaneous nodules, with some bone involvement possible. The

> nodules may show some

> hyperpigmentation, be tender, fester, and/or be enlarged or swollen,

> but not always.

>

> EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision,

> Flame Shaped Hemorrhages, Branch

> Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates,

> Parinaud's Oculoglandular Syndrome,

> and Papilledema.

>

> BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions

> (softening of bone), Myelitis,

> Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating

> Polyneuropathy.

>

> HEART: Endocarditis, Cardiomegaly.

> Possible lab findings: The following may show up during standard

> testing:

>

> Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline

> phosphatase level, elevated bilirubin, abnormal liver enzymes.

> X-ray of the bone may show areas of lysis or poorly-defined areas of

> cortical destruction with periosteal

> reaction. Cardiomegaly may show up on a chest X-Ray.

>

> Biopsies of lymph nodes reveal pathology often indistinguishable from

> sarcoidosis. Reports of biopsies

> strongly suggestive of lymphoma do occur.

>

> Tests occasionally show an enlarged liver with multiple hypodense

> areas scattered throughout the

> parenchyma.

>

> TREATMENT: You MUST consult a knowledgeable physician for information

> on treatment for

> disseminated Bartonella. Some of the medications which have been used

> in the past have included

> Doxycycline (with or without Rifampin), Ciprofloxacin, Erythromycin,

> Azithromycin,

> trimethoprim-sulphamethoxazole, gentamicin, and other macrolide

> antibiotics.

>

> ------------------

>

> My Tincup runneth over with whine.

>

> ABOVE WRITTEN BY TINCUP ON LYMENET.ORG

>

> There are many treatment modalities, I am a firm believer in HBOT (

> hyperbaric oxygen ) and I offer it to lymies.

>

> If you are ever interested here is my homepage link. Feel free to

> contact me anytime.

>

> best regards,

>

> Sudylo RN/CHT

>

> http://www.geocities.com/boejr1/index.html

>

> I hope that this helps : )

>

> May is Lyme Disease Awareness Month. Encourage awareness by purchasing the

> book Confronting Lyme Disease: What Patient Stories Teach Us and sharing it

> with family, friends and acquaintances. Please see

> http://www.confrontinglyme.com/ for more information.

>

January 5, 2010

I saw a LLMD for the first time today and he thinks I have Bartonella as well.

Would love more info.

Momtomonsters

>

> I saw somewhere on here someone mentioned a bartonella group? Just curious,

because my LLMD thinks I have it, and would be nice to talk to anyone about

symptoms, or if anyone on here could chat about it that'd be great

> Bridget

>

January 5, 2010

Here is the link to the Bartonella group I know about:

bartonella/

There might be others, this is the only one I know of.

Best,

On Tue, Jan 5, 2010 at 10:57 PM, momtomonsters <momtomonsters@...>wrote:

>

> I saw a LLMD for the first time today and he thinks I have Bartonella as

> well.

> Would love more info.

> Momtomonsters

>

> >

> > I saw somewhere on here someone mentioned a bartonella group? Just

> curious, because my LLMD thinks I have it, and would be nice to talk to

> anyone about symptoms, or if anyone on here could chat about it that'd be

> great

> > Bridget

> >

>

January 5, 2010

Here's the bartonella group:

bartonella/

On Tue, Jan 5, 2010 at 7:57 PM, momtomonsters <momtomonsters@...>wrote:

>

> I saw a LLMD for the first time today and he thinks I have Bartonella as

> well.

> Would love more info.

> Momtomonsters

>

> >

> > I saw somewhere on here someone mentioned a bartonella group? Just

> curious, because my LLMD thinks I have it, and would be nice to talk to

> anyone about symptoms, or if anyone on here could chat about it that'd be

> great

> > Bridget

> >

>

January 5, 2010

I have bartonella. I was treated for six months with rifampin. It didn't work

for me, but I've had it for at least 35 years and even with my other treatments,

I am proving to be a tough nut to crack. A blood test a few months after the

rifampin treatment ended came back positive, so my LLMD started me on cipro. He

opted not to put me on the levoquin for several reasons, one of which is I

already have tendon problems and levoquin is supposed to do more damage to your

tendons than the cipro does. I just hope it works this time. The good thing

about the levoquin is that after a couple months, you should be done. With the

cipro, as with the rifampin, it will be six months at least.

The symptoms I had that my LLMD said are attributed to the bartonella are

burning pain (I have in my shins and knees), needles in my heels at night so bad

they wake me up, and violent spasms at night. It can also make your confusion

and other brain symptoms worse.

I had glutathione IVs for a little over a month (November, early December). They

helped greatly with my confusion and fatigue, as the glutathione supports the

liver and helps to get rid of toxins. I find them very helpful, but they are

expensive, being out of pocket and all. Even so, they are worth it if you can

find a few extra bucks somewhere in your budget.

Jenni

January 5, 2010

Hi Jenni (in Portland, right?)...and I think we also share the same west

Seattle doc...

I, too, have bartonella. I, too did glutathione infusions for the bartonella

and initially they helped greatly, but temporarily, and then later when I

tried them again, they failed to make a difference. I did months of

rifampin, tested positive afterward for bartonella and then did 3 months of

levaquin which ended in October. I have just a week ago deteriorated again

markedly with symptoms that I associate with the bartonella (though it is

confusing, to say the least, to separate the lyme from the bartonella):

severe burning and tingling of feet, legs, hands and forearms with altered

sensations (cold feels like burning, hot feels like burning) and now for the

first time, numbness and tingling in my face. Also, severe aching of my calf

muscles, the bottoms of my feet hurt, and in general all my muscles hurt,

plus low energy, etc.

So...I am wondering whether the 3 months of levaquin was not enough to knock

out the bartonella, or whether it's just the lyme worsening...

Sure would like to hear more from others about how to distinguish the lyme

vs bartonella symptoms...

Maureen

January 6, 2010

Maureen, Have you seen Burrascano's article in an older issue of Lyme Times

about coinfections? It's the most concise material I've seen on distinguishing

Lyme and coinfection symptoms. It should be archived on the CALDA website...

-

RE: [ ] Re: bartonella

Sure would like to hear more from others about how to distinguish the lyme

vs bartonella symptoms...

Maureen

January 6, 2010

Thank you, , I will look for this. I've just re-read Burrascano's

guideline for the coinfections particulars, but will also check the CALDA

archives.

Maureen

Re: [ ] Re: bartonella

<Maureen, Have you seen Burrascano's article in an older issue of Lyme Times

about coinfections? It's the most concise material I've seen on

distinguishing Lyme and coinfection symptoms. It should be archived on the

CALDA website...

-

January 6, 2010

Maureen I just checked my back issues (I always find info I had forgotten about

when i do this!) and its the Spring '08 issue. There are several coinfection

articles.

-

Re: [ ] Re: bartonella

<Maureen, Have you seen Burrascano's article in an older issue of Lyme Times

about coinfections? It's the most concise material I've seen on

distinguishing Lyme and coinfection symptoms. It should be archived on the

CALDA website...

-

April 11, 2010

I had bartonella [henselae] for about 14 years before I acquired lyme disease.

After I took levaquin for three months, many unexplained symptoms disappeared.

Among those symptoms that I had for years that went away included a chronic gall

bladder infection and a chronic stomach ulcer. The meds improved a chronic

shoulder pain, an enlarged growth in my neck, numbness and swelling in my feet

and lower legs. The neurological damage that I have experienced has mostly been

in my feet.

I still have trouble with numbness in my feet, but I keep in under control with

alternating foot baths of ice water and hot water every day. I have never

developed the awful shooting pains in my feet that some folks complain of.

Kathleen

I've googled this disease up one side and down the other -- and still have no

freaking idea what the story is. According to the two dozen websites I've

checked, the disease is supposed to be self-limiting (you get over it in a few

months), except on those rare occasions when it's not. Also: antibiotics don't

help. Or they do, but you need to take them for 1-3 months. Or maybe not even

then. There are coy little hints about possible neurological damage -- but But

what I really need is the brain dump on bartonella from the folks on this list

who've walked this road. What in the hell do I have here? Which of my symptoms

to I get to blame on this bug? Is this going to be another one of those demons

that I may never shake, or does this one actually resolve?

April 11, 2010

See, I never had foot problems. No numbness, no pain (unless I've been on them

for several hours), no tingling, nada. Just a vicious case of Reynaud's that's

gotten worse with age. (I can get into a pre-wared bed and literally suck the

warmth out of the whole foot end.) I bought some fuzzy sleep socks, and it's all

good.

But I've got a way positive FISH test that shows big blue shiny stained

bartonella guys making lunch out of my red cells, so there it is.

The thing that I find most tantalizing is the occasional hints I'm reading about

neurological damage, which is frequently mentioned but never described. I'm

becoming increasingly aware of personality changes and cognitive declines

lately, and am wondering what role bartonella might play in this. I'm also

wondering if 1.5 years of Lyme treatment have somehow affected the bartonella

symptoms; or, conversely, how having bartonella might have interfered with the

Lyme treatment. Also, I've recently had a huge upswing of arthritis (resulting

in a torn rotator cuff in my left arm left by a huge new crop of

calcifications) and this weird pain in my right shinbone that doesn't go away

and seems to connect up to my hip.

My LLMD is on a three-week vacation, and we're not scheduled to talk again for

another month. Questions, questions....

Sara

On Apr 10, 2010, at 8:23 27PM, KP wrote:

> I had bartonella [henselae] for about 14 years before I acquired lyme disease.

>

> After I took levaquin for three months, many unexplained symptoms disappeared.

Among those symptoms that I had for years that went away included a chronic gall

bladder infection and a chronic stomach ulcer. The meds improved a chronic

shoulder pain, an enlarged growth in my neck, numbness and swelling in my feet

and lower legs. The neurological damage that I have experienced has mostly been

in my feet.

>

> I still have trouble with numbness in my feet, but I keep in under control

with alternating foot baths of ice water and hot water every day. I have never

developed the awful shooting pains in my feet that some folks complain of.

>

> Kathleen

>

> I've googled this disease up one side and down the other -- and still have no