Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 24, 2013.
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Thank you sooo much for this great post! I've been curious about Bartonella for a long time. I was positive for Cat Scratch Disease a couple years after the onset of my chronic illness. Still had the fresh scratch on my arm when I was tested. The infectious disease doctor told me that adults who had not been around cats during their childhood generally got much worse symptoms when infected. I was @ 25 at the time and had just adopted my first-ever cat. A stray, of course. I was actually pretty sick with it, although it was tough to tell what was CSD and what was ME/CFS. One thing I remember is that I was so sore to the touch that it hurt a LOT to take a shower.
I suspect that the CSD was not treated, although I was clearly immune compromised when I got it.
Another interesting twist: I recently took six months of doxycycline for an unrelated infection. During that time, my 33-year sore throat and golf ball glands disappeared. I'd always suspected the sore throat was chronic EBV, but now I'm wondering if it was more likely Bart? Wish I knew more; it seems like the response to doxy is meaningful.
Anyway, thank you thank you for this. I'm going to print it out and take it to my doctor next week.
Loads of good wishes!
Thanks Creekee, so glad that you found it useful.
I just (yesterday) got diagnosed with probable Bartonelliosis as well as Borreliosis (Lyme). Because of my foggy brain, when I write these articles, within a few days I forget it all, so I just read it as if someone else had writen it. I was particularly struck by this line "There is evidence suggesting that a concurrent infection with both Bartonella and Borrelia may result in a disease complex which is able to infect and damage the nervous system ."
I'm going to go and check out that reference...
Really interestng to hear of your improvement on doxy. I had a chronic sore throat for a year or two leading up to getting full-blown ME, then it disappeared. I met my wife a couple of years before I got ill, and she had two cats, that had both been strays. One moved with her when we got married, it died two years ago after I came down with ME. Coincidence? Maybe... Maybe not.
Would complete blood count show some abnormalities if we were infected with Bartonella, or would it be possible to have it and have all results within normal range?
I'm no expert, but my full blood count stuff on the NHS came back normal, and here I am being told I have bartonella now.
Stephen Buhner, author of Healing Lyme, has a new book out devoted specifically to Bartonella. He also has some information on his website including a protocol using herbs:
In 2009 I was totally bedridden and tested positive for bartonella. Today still not recovered but no more sign of bartonella. I think it is an opportunistic infection that reappears when your immune system is down with ME. In other cases it is a co-infection of Lyme.
My CBC was normal. And I also tested highly positive for Bartonella.
Does anyone know if Bartonella can impact your CD57 count?
I don't know specifically, though having just been diagnosed with probably Lyme and Bartonella, my count is normal:
CD57+/CD3- absolute count – 239 (60-360)
Mind you, I read that it is normally low in Lyme patients, but mine isn't...so who knows?
According to Buhner, people with Lyme generally have low CD57 which is partially why he recommends cat's claw. However, Ema said her CD57 wasn't low even though she had Lyme. There are conflicting studies on whether or not people with Lyme actually have low CD57. This is a rebuttal to a study that claims to refute the notion of decreased CD57 in Lyme patients:
Soluble CD14 is supposed to be high in Lyme too, but mine is low.
You seem to get different levels with different strains though (even the three main strains known to cause Lyme) so that may be another factor that influences these things, on top of disease stage, duration, gender, co-infections! I'm pleased I have KDM who has seen a lot of people and a lot of results, I'd be stuck without that I think.
You are very lucky!
Interesting that different strains result in different levels. Which makes me wonder about Bart having some effect. I know many of those with Lyme have been treated without seeing their CD57 correspond in any obvious way. I.e. when they felt better, their number stayed the same or went down. I think there's some general consensus that the number will eventually come up in a well-treated Lyme patient.
I'm currently negative for Lyme by Western Blot and PCR, but my CD57 has dropped from 71 a year ago to 40 last month. "Expected" range on that is 60-360 but most Lyme pros I've heard talk about it feel the number should be over 200 for a person to be healthy, On the other hand, I know several sick with Lyme who have numbers well over 200 during their infection. Maybe it's a very slow downward trend once you're infected. Maybe mine has been slowly sliding for 33 years. Really wish I could find a good LLMD. Currently seeing Dr. Fry, but it's hard to get his attention on anything other than his special cootie.
Thanks for sharing your KDM story, snowathlete. It's really inspiring to get to watch someone get the tests they need from someone who can actually make sense of them. Will be watching your treatment very nosily!
Thanks for this article... this is one area Im still looking at and a doctor thinks I could have (but I havent been tested for Bartonella..just waiting for my lyme disease results which I should of had back before now).
Thank you Joel, for such an interesting article...again!
Now that you have been diagnosed with the infection, have you been put on an antibiotic regimen? Did they test for it for specific reasons? My doctor never suggested to check for it here in NY although I have many cognitive issues. I will ask him about it now. It seems to me that because of our dysfunctioned immune system, we are not able to properly fight any type of invasion. This is probably why many of us have such high titers of viral in our body and why we might harbor these opportunistic infections.
Thanks taniaaust1, Nielk.
Yes going to be starting 8 week course of oral antibiotics. Then he wants to see me again and assess how it is going.
I think KDM tests most of his patients for these things (a wide range of zoonotics and other pathogens) that can cause the same symptoms, because if they are the real cause of the symptoms then you can treat and maybe get better, and if co-infections then you can treat them, and I guess, also maybe get better (even if not cured). For me that is important, to find out if you have these things and test for them.
I'm sorry, but I can't concentrate on this story because that kitten is so cute. Cute little germy runt!
You can get tested for Bartonella here: http://labsmd.com/tests.php?view=search_results
KDM is looking into Bartonella very closely. He gets people tested for a lot of species, unknown to be pathogenic in humans. A publication would be on it's way. In his 12th web seminar, which will be available in English in two weeks, he is talking about 32 species and the one found in his patients is usually not Cat Scratch Disease (Hensalae).
What I miss in this article above are mental issues. Bartonella would be responsible for psychiatric illness like depression, anxiety, tics and more severe psychosis or schizophrenia, but there is little published about this. So one would not know. KDM is also looking into this. With treatment at first these symptoms can get very bad but then they get better. A Dutch psychiatrist who researches the role of infections in psychopathology is also looking into this. A lot of people with ME/CFS suffer from (mild) psychiatric symptoms. If they are more severe they are more likely diagnosed with a psychiatric disease. But when you look at family members different diagnosis may be in one family.
I tested positive for lyme, bartonella quintana and bartonella henselae in the past. Now I am negative for all of them. My blood count have always been normal. And my CD57 went up with antibiotic treatment. Now it is normal, but I am still symptomatic, so I go by symptoms. Btw: I am the one who had severe neuropsychiatric symptoms, mainly depression and anxiety, so I think the connection with bartonella is true....
You can also try a Google Site Search
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