[ 12. April 2008, 11:38 AM: Message edited by: mikej2323 ]
Posted by Michelle M (Member # 7200) on :
Oh, my!
Was there a picture with this?
Michelle
Posted by Lymetoo (Member # 743) on :
Bartonella IgG: 1:64 B. quintana
Isn't this positive?
Posted by timaca (Member # 6911) on :
Mike~ I've been wondering about your niece since your last post about the exceptionally hard time she was going through! How is she?
I can only give you some broad advice, based on the many different kinds of tests I've had done.
An IgG titer of 1:320 would make me suspicious of a possible active infection going on. I would try some google searches on the Anaplasma that your niece has a higher titer too and see if some researchers names come up. Contact them and see what they have to say.
As you know, I was wondering about my mycoplasma titer of 1:64. That is not significant. Titers above 1:200 are considered suggestive of a possible mycoplasma infection.
In other pathogens, that is also what I've found...above 1:200 or 1:320 is suggestive of possible infection. That is why I would check out the anaplasma for your niece.
Best, Timaca
Posted by kelmo (Member # 8797) on :
The fact that it says (and I'm assuming this was the legend on the blood slide photo), that there are many bartonella identified, means she is very positive for bartonella.
How old is she, poor baby? My daughter started her journey around 15, finally diagnosed at 17 and was positive for two strains of bart.
This is a great test, but even the tests have flaws. She may have more things lurking that will probably come out when she starts antibiotics.
My blood slide a year ago was absolutely clean. After six months of an antibiotic, I started having symptoms. Had my blood done again, and bartonellae are visible on the blood.
I had been infected for quite a long time, but it had taken up a deep residence, doing sinister work behind a cloak of biofilm.
Posted by mikej2323 (Member # 8913) on :
Woops, I made a mistake...
The Anaplasma was negative, the Anti-Nuclear Antibody, or ANA was nucleolar, 1:320.
There was a picture slide done, but the arrows they use to indicate didn't show up well since our copy was a fax.
Do you suppose 1:64 is "significant"? To me, since it states, "many coccobacilli adherent to erythrocytes" tells me that there are actually bartonella bacteria attached to the RBCs.
It also states, "this is suggestive of Bartonella spp." It doesn't say highly suggestive, so I interpret that it is an explanation of what Bartonella does.
Mike, yes this means Bartonella, doesn't have to say "highly suggestive". When I had mine done it was only "moderate":
Posted by SForsgren (Member # 7686) on :
It looks like Bartonella here is pretty clear from the test results. Have you tried any Bartonella treatments like Rifampin or Levaquin or others? Did she have a response or worsening of symptoms?
Posted by seibertneurolyme (Member # 6416) on :
Mike,
In my opinion she definitely has Bartonella.
You have 2 test results that show that.
1) The titer -- in my opinion even if it is low 1:64 I would consider this positive. This is the same result hubby had on first Fry test -- only did the titer test once.
Hubby has never had Lyme antibodies show up so any test that showed antibodies we felt was highly significant for him.
You could do a test for total immune complexes or could be called circulating immune complexes with Lab Corp or just about any lab to confirm that there is an infection of some sort in the body -- that test would most likely show abnormally high results -- it tests for antigens that are bound up and not reacting to produce antibodies.
I think I have explained that correctly. The problem with such a test is that you don't have a clue what the actual viral or bacterial or fungal infection is that is the culprit. However, such a test could be done on a routine basis to monitor therapy.
As the infection clears the total circulating immune complexes goes down and the actual antibodies show higher titers. This is what happens when people seroconvert while on antibiotics or after antibiotics.
I really don't know why more docs don't do these tests.
2)The bloodslide result is positive. The phrase "suggestive" is medical terminology. There are other bacteria with the same shape as Bart so the term suggestive is used rather than some other phrase. However, the test is using reagents (think that is the correct term) which only test for Bart.
Hubby talked to Fry lab tech (Jeromy) -- that lab actually buys their reagents and lab materials from Focus Technologies which is a very large lab and has a website. Fry Labs has not actually developed their own test -- they just take the time to make the bloodslides and actually look at them under a microscope.
Hubby had moderate (3) level of Bart on both Fry tests. Treated for Babesia in between tests and that cleared, but no change in Bart levels.
The Bart bacteria adheres to the outside of the red blood cells before it penetrates the cell membrane. What the lab is looking for is the bacteria on the outside of the cells -- can't be identified inside the cells themselves like Babesia can.
Note: I was wondering if you had ever considered taking your niece to St Jude's -- I would think they would be equipped to do whatever testing was needed and are used to dealing with critically ill patients. Have no idea what their experience level is with tickborne illnesses, but I think I would trust them more than the University hospitals. Just always got the impression that they were very patient oriented.
Bea Seibert
Posted by lou (Member # 81) on :
Have a question for you, Bea.
I had a test called "Immune complex C1Q Binding Assay," which was in the normal range. Is this the test you are describing, or something else? I am no longer seeing the doctor who ordered this and did not get any explanation.
Mike, I don't have enough experience with bart to venture an opinion on this. But maybe you could go back and edit your first post in this thread to show the correct results on ANA and anaplasma. Lymies need to have things simple, or at least many of us do.
Posted by mikej2323 (Member # 8913) on :
I went back and edited the original post.
Timaca- her CSF mycoplasma pneumoniae IgG was 1:640--- not 1:64. It has always made me wonder why doctors disregarded it.
She has been on Levaquin several times; once in 2006 for about 10 days for UTI, then later that year for about 5 months and a couple times this year for about 10 days for other minor infections.
We never really noticed anything or any kind of changes on Levaquin. The only thing we really have noticed, on any antibiotic, was taking her off Levaquin and adding Zithromax. This eventually led to her being unable to swallow or speak.
She did have the characteristic red striae marks on her back and sides as well as her kneecaps. Since Levaquin can pass the blood-brain-barrier, I'm not sure why we never saw any results with it.
We did get a picture, but right now, we only have a fax. We're going to call Fry and ask them to send one via email.
We have not tried Rifampin. I am leery of starting this without any kind of LLMD consulting with our physician. We haven't had any LLMD show any interest or one that we feel comfortable with. We really need someone who knows this stuff. They are all very timid to initiate anything- which we understand. Any correpsondence I have with them, they make me feel like they don't want to get invested in our case. As of right now, nobody really acts like they want anything to do with her. We don't know who to consult with???
I'm not sure if the circulating immune complex test is the same as the C1q binding assay either? My hunch is that they are different. I will look into this more.
Yes, the test is the same one. My lab manual calls it Immune Complex Assay, Blood. A normal test result shows -- complexes not detected or C1q binding less than 13%.
Note: From that list I think that Babesia or Bartonella would be more likely than Lyme to show an abnormal test result.
Description of test: Complements are proteins, which when activated, assist the cell lysis function of antibodies. Activation of complement by an antigen-antibody response is called the "classical pathway".
Complement activation independent of antibody, initiated by complement binding to the surface of infectious organisms, is known as the "alternative pathway". Both pathways ultimately result in the complement cascade's formation of the membrane attack complex (MAC).
This radioimmunoassay (RIA) test is helpful in diagnosing autoimmune and infectious inflammatory disease processes.
Mike,
I think Timica was talking about her own test result to Mycoplasma being a 1:64 titer.
Hubby noticed almost nothing from his first 3 months of Levaquin 4 years ago. This time it imediately stopped his tremors and muscle rigors with the first dose. However, it started failing within 4 -6 weeks and we added in Lyrica (a seizure med). LLMD recently added Bactrim, but not sure that combo is working either.
I am convinced that an entrenched Bartonella infection will not go away with Levaquin only. Must have a 2nd med. Hubby tried adding in Rifampin but when he got the dose above 50 mg daily is when the tremors and muscle rigors tried to return.
Trying to treat Babesia with Alinia now and that is also aggravating the tremors and muscle rigors. Next appointment with LLMD is 4 weeks away -- he stopped Levaquin again for now to see if we can figure out for sure if it is primarily Babesia or Bartonella. I really think it is both-- just not sure how to treat without causing unbearable herxes.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Mike,
What is the density of the Bartonella found? -- number in right corner of the copy of the blood slide.
The word "many" used in the description sounds like this might be a worse infection than hubby's -- his says moderate (3) density.
Another test you might want to consider since you think there could be a yeast issue also is the C4a -- will not distingquish between yeast and Lyme but should show severity of this inflammatory marker.
Bea Seibert
Posted by FuzzySlippers (Member # 13658) on :
Hi Mike,
I just thought I'd share my experience, in case it might help.
I've been diagnosed with Bartonella by two different Lyme specialists. My Fry test came back positive. The Density of bartonella listed on my test is #4 (many). "Many coccobacilli adherent to erythrocytes." Meaning I have a very heavy Bartonella pathogen overload according to docs.
For what it's worth, I've also been diagnosed with Lyme and Babesia.
As far as the Bart goes, I certainly have had all of the symptoms associated with it. I posted a Bartonella/Babesia Symptom Questionnaire on this Forum. It's on the top of Medical Section here with a sticky note.
How far can your niece and her family travel for Lyme medical care?
FuzzySlippers
For you convenience, I'm pasting the Bartonella symptoms here:
Bartonellosis
Common symptoms of bartonellosis include:
___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)
___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature
___Headaches, especially frontal (often confused with sinus) or on top of head
___Eye symptoms including episodes of blurred vision, red eyes, dry eyes
___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)
___Sore throats (recurring)
___Swollen glands, especially neck and under arms
___Anxiety and worry attacks; others perceive as "very anxious"
___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature
___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
___Muscle pains especially the calves; may be twitching and cramping also
___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
___Tremors and/or muscle twitching
___Heart palpitations and strange chest pains
___Episodes of breathlessness
___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
___Gastrointestinal symptoms, abdominal pain and acid reflux
___Shin bone pain and tenderness
Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.
It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified. While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.
Posted by mikej2323 (Member # 8913) on :
The copy I have from Fry is a fax, and hard to see. It looks like it got cut off.
I think she's had the C1q test done before, I'll have to check her records.
Yep, I did read Timaca's post wrong, it was hers. Thanks for pointing that out. Good stuff here everybody- thanks!!!
