Invest in ME Conference 12: First Class in Every Way
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Positive for Bartonella...and I have so many questions!

Discussion in 'General ME/CFS Discussion' started by Firefly_, Sep 24, 2016.

  1. Firefly_

    Firefly_ Senior Member

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    So I checked my email today and had one from Dr Kaufman that my Bartonella test came back positive. This test was a tissue sample as opposed to a blood test which had previously come back inconclusive. He wants me to schedule a phone visit to go over my treatment options but it may be several weeks before they can slot me in (I'll call Monday, but that's normally the case).

    I'm just wondering if anyone has any sort of info or insight as far as treatment efficacy, and does this change my dx from CFS to maybe Lyme disease? Are they the same thing, or is Lyme a completely different diagnosis? I'm afraid that I'm getting my hopes up for some sort of cure. Any info would be much appreciated!
     
  2. Sushi

    Sushi Senior Member Albuquerque

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    I had a positive PCR for Bartonella and part of the treatment was a year on Rifampin. He may prescribe this--if so be sure that he checks your cortisol levels periodically. It tanked mine and took a long time to recover. I think many of us have both Lyme and/or a co-infection as well as ME/CFS though you might be lucky and only have Bartonella. Treating Bartonella made no difference in my symptoms I'm sad to say.
     
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  3. Firefly_

    Firefly_ Senior Member

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    Well that all sucks lol, I don't make any cortisol on my own already, have to take Dexamethasone, and as far as the rest, that's what I'm afraid of, that it's just another dx to add to the ever growing list of crap. Thanks for taking the time @Sushi :thumbsup:
     
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  4. Valentijn

    Valentijn Senior Member

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    Having Bartonella might make Lyme (Borrelia) more likely, but I don't think it would be enough to diagnose it.

    I don't think it would nullify the ME diagnosis, unless treating the infection makes the ME symptoms go away. Keep in mind that there are several infections shown to trigger ME in a small fraction of the population. Bartonella, Lyme, etc might be additional infections which can do this.
     
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  5. Theodore

    Theodore Senior Member

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    Hi Firefly! Sorry to hear that but at least you have something to fight :).

    Is it true that they diagnosis more and more bartonella in ME patients?

    From a symptomatic point of view, how can someone differentiate ME from a tick borne infection?
     
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  6. Valentijn

    Valentijn Senior Member

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    Post-exertional malaise. In my experience, non-ME patients with Lyme are completely clueless that such a thing even exists.
     
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  7. Firefly_

    Firefly_ Senior Member

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    Thanks all, I'm always stupidly hopeful when they find yet another thing that that is the culprit and treating it will cure me lol, but that's not been the case to date. Some things make me better for a time then kind of fade off. I didn't think about the PEM aspect of it @Valentijn and that is a huge symptom for me so....I guess I'll just see what happens. I am concerned by some of the bad outcomes that have happened to people on long term abx.

    That being said, if the doc told me to dance naked in the moonlight while rubbing my behind with a porcupine I'd probably do it lol, desperate times and all that ;)
     
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  8. voner

    voner Senior Member

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    @firefly, here is a very long video that explains chronic Bartonella infection and treatment approaches.



    i'm not familiar with tissue samples being used for diagnosing Bartonella. Can you elaborate on this?
     
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  9. Firefly_

    Firefly_ Senior Member

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    My dr took a punch biopsy on my upper arm and put it in a vial of saline then I sent it in to the lab where it was cultured for a couple of weeks. Thank you for the video link.
     
  10. Theodore

    Theodore Senior Member

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    @Firefly_

    Bump :)
     
  11. Firefly_

    Firefly_ Senior Member

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    Im not sure what percentage of pwme are also positive for this, I can't answer that. As far as having something to fight I am hopeful, but not unrealistically so now I think. I have so many different things going on its hard to figure out the root cause but maybe, with a lot of luck this treatment will at least help me improve. Just keep plugging along. At least till the money's gone lol:confused:
     
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  12. IreneF

    IreneF Senior Member

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  13. valentinelynx

    valentinelynx Senior Member

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    I, too, finally got a positive test for something infectious with Dr Kaufman - Bartonella. For me it was an IFA (antibody test). I had tested negative some months earlier, and it converted to positive after a couple of months on Rifampin. I was happy to have a target to treat. Started IV ceftriaxone 2 months ago. Seen some definite improvements in joint pain, stiffness and muscular stiffness. Energy issues are not much improved if at all, yet. However, I've been given to expect treatment of Bartonella to be lengthy and prone to relapse.
     
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  14. Strawberry

    Strawberry Senior Member

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    I had a positive DNA test done by Dr K also proving bartonella henselae. I'm about 4 months into treatment, and feel no difference at all. He has me on doxycycline and clarithomyacin, I think that different combination might be for my MCAS issues. When I have so many high viral titres, how can I ever know if it is the chicken, or the egg? Or if I am a zebra, not a horse? Just not sure bartonella is the real reason for my sickness and fatigue issues.

    Does anyone know how long we are to be expected to be on antibiotics?
     
  15. Firefly_

    Firefly_ Senior Member

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  16. valentinelynx

    valentinelynx Senior Member

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    Ah, I wish I knew! I was sure I had a more informative reference somewhere about chronic Bartonella treatment, probably with Breitschwerdt as author (he is the main driving force behind the current push for investigating Bartonella in chronic human disease, and the founder of Galaxy Diagnostics - a lab the specializes in finding Bartonella). But, until I find such reference (if it exists) here are the 2 papers I found a few years ago that made my ears prick up and wonder if Bartonella was "it" or at least part of a zoonotic disease issue (e.g. Lyme, etc.) Especially as my husband had classic Cat Scratch Disease the same year I fell ill (he had a large swollen lymph node in his groin - got treated with 10 days of Bactrim, and that's it! My symptoms weren't typical of anything, so I didn't get treatment (didn't ask for it - no internet yet in 1993 - so I thought Lyme disease was bulls-eye rash and knee swelling, not painful round rash and stiff hands (and crushing fatigue, and many other symptoms)...

    Anyway, 2 good Bartonella articles (and one is on the CDC website!):

    Bartonella sp. Bacteremia in Patients with Neurological and Neurocognitive Dysfunction

    Bartonella spp. Bacteremia and Rheumatic Symptoms in Patients from Lyme Disease–endemic Region
     
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  17. xrunner

    xrunner Senior Member

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    The most effective abx was ciprofloxacin (levofloxacin would be more effective but it was more expensive and my GP couldn't prescribe it) but I had to suspend it due to tendonitis. I was then prescribed a combination of minocycline, rifampin and azithromycin which worked fine. After about four five weeks all B. symptoms were gone. I was on that regime for three months, that was seven years ago. Symptoms never came back.

    In my case treatment helped a lot esp with CNS symptoms. Your best source of information is Dr Burracsano's guidelines. For me it worked out just like he writes in his guidelines.

    http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf
    BARTONELLA-LIKE ORGANISMS
    It has been said that Bartonella is the most common of all tick-borne pathogens. Indeed, there seems to be a fairly distinct clinical syndrome when this type of organism is present in the chronic Lyme patient. However, several aspects of this infection seem to indicate that this tick-associated strain of Bartonella is different from that described as “cat scratch disease”. For example, in patients who fit the clinical picture, standard Bartonella blood testing is commonly non-reactive. Furthermore, the usual Bartonella medications do not work for this- they suppress the symptoms but do not permanently clear them. For these reasons I like to refer to this as a “Bartonella-like organism” (BLO), rather than assume it is a more common species. Indicators of BLO infection include CNS symptoms out of proportion to the other systemic symptoms of chronic Lyme. There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and even seizures, in addition to other unusually strong symptoms of encephalitis, such as cognitive deficits and confusion. Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis), sore soles, especially in the AM, tender subcutaneous nodules along the extremities, and red rashes. These rashes may have the appearance of red streaks like stretch marks that do not follow skin planes, spider veins, or red papular eruptions. Lymph nodes may be enlarged and the throat can be sore. Because standard Bartonella testing, either by serology or PCR, may not pick up this BLO, the blood test is very insensitive. Therefore, the diagnosis is a clinical one, based on the above points. Also, suspect infection with BLO in extensively treated Lyme patients who still are encephalitic, and who never had been treated with a significant course of specific treatment.

    The drug of choice to treat BLO is levofloxacin. Levofloxacin is usually never used for Lyme or Babesia, so many patients who have tick-borne diseases, and who have been treated for them but remain ill, may in fact be infected with BLO. Treatment consist of 500 mg daily (may be adjusted based on body weight) for at least one month. Treat for three months or longer in the more ill patient. It has been suggested that levofloxacin may be more effective in treating this infection if a proton pump inhibitor is added in standard doses. Another subtlety is that certain antibiotic combinations seem to inhibit the action of levofloxacin, while others seem to be neutral. I advise against using an erythromycin-like drug, as clinically such patients do poorly. On the other hand, combinations with cephalosporins, penicillins and tetracyclines are okay.

    Alternatives to levofloxacin include rifampin, gentamicin and possibly streptomycin. A very recent article suggests that prior use of quinine-like drugs including atovaquone (Mepron, Malarone) may render Levaquin less effective. Therefore, in a co-infected patient, treat the BLO before you address Babesia species. Levofloxacin is generally well tolerated, with almost no stomach upset. Very rarely, it can cause confusion- this is temporary (clears in a few days) and may be relieved by lowering the dose. There is, however, one side effect that would require it to be stopped- it may cause a painful tendonitis, usually of the largest tendons. If this happens, then the levofloxacin must be stopped or tendon rupture may occur. It has been suggested that loading the patient with magnesium may prevent this problem, and if the tendons do become affected, parenteral high dose vitamin C (plus parenteral magnesium) may afford rapid relief. Unfortunately, levofloxacin and drugs in this family cannot be given to those under the age of 18, so other alternatives, such as azithromycin, are used in children. Incidentally, animal studies show that Bartonella may be transmitted across the placenta. No human studies have been done.

    BARTONELLA & ”BARTONELLA-LIKE ORGANISMS”- · Gradual onset of initial illness. · CNS symptoms are out of proportion to the musculoskeletal ones- if a patient has no or minimal joint complaints but is severely encephalopathic (see below), then think of Bartonella/BLO. · Obvious signs of CNS irritability can include muscle twitches, tremors, insomnia, seizures, agitation, anxiety, severe mood swings, outbursts and antisocial behavior. · GI involvement may present as gastritis or abdominal pain (mesenteric adenitis). · Sore soles, especially in the morning. · Tender sub-cutaneous nodules along the extremities, especially outer thigh, shins, and occasionally along the triceps. · Occasional lymphadenopathy. · Morning fevers, usually around 99. Occasionally light sweats are noted. · Elevated vascular endothelial growth factor (VEGF) occurs in a minority, but the degree of elevation correlates with activity of the infection and may be used to monitor treatment. · Rapid response to treatment changes- often symptoms improve within days after antibiotics are begun, but relapses occur also within days if medication is withdrawn early. · May have papular or linear red rashes (like stretch marks that do not always follow skin planes), especially in those with GI involvement.
     
    Last edited: Sep 30, 2016
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  18. Firefly_

    Firefly_ Senior Member

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    Thanks for that @xrunner, very informative. I've actually been suffering from gastritis the last 2 days which is why I haven't been up to posting. I get it periodically ranging from mild to severe and it's very interesting that it could be attributed to Bartonella!
     
  19. Daffodil

    Daffodil Senior Member

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    i think the amount of time it takes on antibiotics depends on how long you have been ill

    as for whether chronic lyme nullifies a CFS diagnosis, I don't think anyone knows the answer....if you ask me, the 2 look very similar.

    but then again, they did that spinal fluid study and the 2 diseases showed different proteins...so who knows
     
  20. IreneF

    IreneF Senior Member

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    The presumption is that if you have something else that can explain your symptoms, then you don't have CFS/ME. But until we have an actual lab test, instead of a bunch of symtoms, there's no way to really know.
     
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