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bartonella and lyme
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bartonella and lyme

I am new to this forum and I'm interested to know if having Bartonella means you definitely also have Lyme ? My husband was misdiagnosed over three years ago as having frontal lobe dementia ?? After countless visits to neuro "specialists" who all came up with the same diagnosis, I finally took my husband to a Lyme specialist because the Dementia thing just didn't make sense to me. He was tested and although the lyme portion of the labs showed negative he was found to be positive for both b. henselae and b. quintana bartonella. They are treating him for the bartonella now. I am wondering if anyone has ever been through this and if he probably also has lyme. Thanks for any input
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Avatar_f_tn
It's not impossible to have Bart without having Lyme, but it's not common.
Ticks are little sewers filled with all sorts of pathogens.

Remember, the serology tests are not infallible. And they can bounce back and forth between positive and negative---- both IgM and IgG. Even with Igenex,the best lab for tick borne diseases.

I never  had a positive WB through Igenex. Definitely had Lyme though, proven later by a positive PCR test of my spinal fluid.

I'm glad you went to a Lyme specialist. VERY glad. Neurologists adhere to the same horrible guidelines that the IDSA use.

Whether you or your husband feels it's necessary to have repeated WB tests done or not isn't for me to say. I was able to do that because of my great insurance. Others aren't so lucky.

What geographic area are you located in, if you don't mind me asking.
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4451049_tn?1387157037
Bartonella is one coinfection that can be transmitted by other insects, particularly fleas. So yeah, I'd say that there is a fairly decent chance that he could have Bartonella in the absence of Lyme. But as cave said "the serology tests are not infallible", so it's hard to say for sure if he has Lyme or not. I would follow up with a Lyme test in the future.
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Avatar_m_tn
Thank you for the replies. The lyme doctor we went to said that as soon as they treat the bartonella they will retest for lyme at that time. We are located in Upstate New York. My husband has been sick for around 4 years and has been in a nursing home for the last 7 months…he is 54 years old !!!! I agree that i wish other doctors were able to say that all of what he was going through just didn't make sense and had different guidelines to follow when it comes to lyme... just because the labs say that you don't have Lyme doesn't mean anything. i wish one of them would have directed me in a different direction than labeling him with dementia. i just pray that the treatment will be able to help him at this point .
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Avatar_f_tn
I'm not clear on what tests were performed at which labs for which MDs to read.  All of that makes a difference in the quality of the test itself, the lab's analysis, and the MD's interpretation of the results.  

The various tests are structured in different ways, and some are more reliable and/or accurate than others.  For example, the tests that rely on the immune system's reaction to an infection (ELISA and Western blot) are often wrong if they say 'no Lyme here', while the IGeneX Labs tests are structured quite differently and the results are generally more reliable.

I believe it is possible to have bartonella and not have Lyme, but it's perhaps unusual, since as said above, the ticks usually carry Lyme too.  But ticks are tricky beasts.  

[I've put tangetial comments below about recordkeeping.  skip over it if you aren't interested.]

Do you have copies of the Lyme test results?  I learned to always get hardcopy of ALL test results at the appointment when the MD is telling you the results.  If the results get stashed in a folder at the doc's office, you will never know if you got ALL the results, and given how tricky Lyme and its evil little buddies are, the more information you have documented, the better able to deal with future decisions about testing, treatment etc.  A good Lyme doc likes to see old tests, because they tell a story.

Which labs did the tests also matters a great deal, because some are better than others and/or the test kits they use are more accurate than others.  You indicate your husband is being treated by a Lyme specialist, which is excellent ... but always keep in the back of your mind the earlier experiences you have already had, and know that Lyme is a tricky and developing area of medicine, and even 'Lyme specialists' overlook things or don't line up all the dominoes the way another MD might.

Become a file clerk of all your husband's medical tests.  Be a bit obsessive about it, because your repository of records will be the only one all in one place.  We as a society are so accustomed to assuming that all docs are on the same page for diagnosis and treatment that a disease like Lyme comes as a rude shock when the docs are all over the place.

I've got big fat binders of test results of my own and for a member of my family, along with a print out of the daily log I used to keep on computer, listing date, meds and dosages taken, symptoms, how I felt and slept, and notes of dr's appointments.  It's amazing how much can be forgotten or overlooked that could be useful to a future MD looking back.

After I was finished with treatment for Lyme and babesiosis (like malaria, but carried by Lyme ticks), I was a rundown wreck.  I'd been through a war and felt that way.  I found a most interesting MD, originally from Europe, then about 80 years old but still practicing.  I needed her to help me rebuild my body, my health, my stamina, and my immune system.  She LOVED my binder log and reviewed the entire thing to get a history of what I had been through -- she did the review without me there, just reading the entries.  

'Dr Wisdom' (as I nicknamed her) then figured out what I needed to put myself back together, with supplements, certain nourishing foods, a light exercise program that built up over time, and so on.  Without my binder, I wouldn't have had the data to tell her what my body had been through, since Lyme does hard things to the mind and memory, as you know.  The binder sounds like a lot of work, but really just a few minutes typing a day and it's done.

Your husband is very fortunate to have you helping him.  This recordkeeping sounds like a lot of work, but even if you do just a few minutes a day, it can help now and in the future.  Memory fades so quickly.

Keep us posted!  We know your husband has a guardian angel.
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Avatar_m_tn
Thank you. I think the log is a very good idea and I will keep you posted of my husbands progress. Maybe what we go through and figure out may help somebody else in the future ;)
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Sometimes the use of antibiotics for sometime prior to the test can provoke a positive response and thus a positive result.  So treating for Bartonella prior to the test may help.  However, it's better to discontinue the antibiotics for a few weeks prior to the test as the bacteria like to shift forms in the presents of some antibiotics.  
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Avatar_f_tn
I wouldn't do that without getting the doc's prior approval, tho ....
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1763947_tn?1334058919
In my case I was positive for Bart's but negative for Babesia when I clearly had it.  My LLMD treated me on those clinical symptoms luckily because I became very ill from Babesia.
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798555_tn?1292791151
Lets not forget cats also carry  Bartonella henselae.

Mostly found following a scratch or bite from a cat within about one to two weeks. Cat scratch disease, or "fever", is a infectious disease caused by the intracellular bacterium Bartonella henselae. Some people think de-clawing house cats is unjust.........well this is one of the reasons reasons it was done.
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Avatar_f_tn
It was (and still is) commonly believed that "Cat Scratch Disease" was a "mild, self resolving infection."  But some ID doctors (esp. Jane Koehler) at UCSF have researched Bartonella for years, and learned a lot about how nasty it can be when it becomes advanced and chronic.  There's also Dr. Breitschwerdt at NC State who has been waving red flags about the hidden Bartonella epidemic for years.

Psychiatric problems are well documented with Bartonella, and your poor hubby has a double whammy infection with 2 different species.  Bartonella seems to get established and be a whole lot worse with Lyme than without, but the UCSF docs have documented cases where Bartonella gets nasty even with a normal immune system.  

At least 2 dozen insects are known to transmit Bartonella, so there's plenty of ways to get it without getting Lyme.  It's possible that some people with Lyme and Bartonella already had low grade/hidden Bartonella when they got bit by a Lyme infected tick, and the ensuing Lyme infection allowed the Bartonella to take hold.

Most in mainstream medicine are oblivious to Bartonella. And if they have heard of B. quintana, they were probably told it's been found in homeless people in big cities.  The "official" story is that humans get it only from the body louse, but that's just not a good assumption any more.

I had to spell Bartonella for my GP. The CDC is really asleep at the wheel on this and is very slow to raise awareness.  They don't seem to react much until something is an emergency and killing lots of people.  Feel free to complain to them. They are required to record complaints and eventually they add up.

Sounds like your doc is going to deal with the Bartonella first, and then see if Lyme is a problem.  Nothing wrong with this approach.  Lyme might be there or it might not.  Just curious... did his doc run a Western Blot?  If so, what were the results?  It is possible that his immune system is suppressed and not producing enough antibodies to show up on a test.

Be prepared for your husband to be treated for a year or longer.  My Bartonella didn't seem all that bad, and we treated it for 6 months. Thought it was gone until a year later, symptoms showed up that seemed to be Bartonella. A few months later, I was really sick with a full blown flare up of Bart.  I'm assuming I'll need at least a year of Rifampin for it.  The anti-Bartonella herbs seem very helpful as well.

I'm so sorry your husband went so long without being diagnosed. How devastating. At least you have hope of recovery now!  I've never heard that Bart psych symptoms are permanent, so you should see your husband start to come back soon.
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Avatar_m_tn
Thank you so much for your comment. Have you ever heard of anyone that had both species of Bartonella like my husband ? Although the psychological issues are a problem, his physical condition is also so far advanced. I pray that the treatment will begin to bring him back to himself both physically and emotionally. At least there is now some hope since we know what we are dealing with. To answer your question about the western blot; i had requested this test be done by his GP because I always felt in my gut that the diagnosis of dementia, by not 1 but 4 neurologist "specialists" was not right. It just didn't make sense to me and I always felt in my gut that he had Lyme, not even knowing about all the other tick borne diseases. All I heard of the test results was that they had come back "negative" for lyme and no further testing had been done. His new doctor plans on doing additional testing after he has been treated for at least 4 weeks for the Bartonella. I will keep you posted on his progress. Thank you again for taking the time to reply.
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Avatar_f_tn
I seem to recall that another person on this forum had both of those same 2 species of Bart. She was quite sick. She also had a lot of pain in her legs, which is more common with the b. quintana.  B. quintana was known as "Shin Bone Fever" or "Trench Fever" during WWI.  It usually comes from a louse or flea bite, but Lyme patients are turning up with it, too, so it seems to be tick borne.

Your husband (and you, as his POA) have a right to copies of all medical records, including all tests done on him.  You can still contact every doctor he's ever seen and request a copy of all his records, including clinical notes.  Often, doctors get these records from prior doctors, so the most recent one might have the most complete file.

I suspect that the screening test for Lyme was negative on your husband.  It would be either an ELISA or IFA test.  The CDC testing protocol says not to run the Western Blot unless one of these screening tests is positive.  This is a big part of the controversy over Lyme.  

These screening tests are negative waaaayyyy too often to be a good screen, especially in people who've been infected for months or years. But the CDC stubbornly refuses to budge. It has been devastating for so many Lyme patients who don't get diagnosed and develop severe illness.

When your husband's Lyme doc is ready to retest him, ask if it will be at IGeneX.  They do more advanced testing and report more bands than other labs. They'll show if he has any Lyme specific antibodies, even if the overall result is CDC "negative."  

I was negative on an IFA screening test on both blood and CSF and I was told I did not have Lyme.  But at IGeneX, I showed 2 Lyme specific bands and they said I was "positive."  I'd been infected for 6 years and chronically ill for 16 months, bad enough to be in severe pain and hospitalized. I even had mental confusion and other cognitive problems, along with brain lesions and severe GI symptoms.

(The article "Bell's Palsy of the Gut" really helped me understand how Lyme & Bart were messing up my gut. I later figured out I had Peliosis Hepatis because Bart had messed up my liver.)

Sometimes it is good to knock down one of the tick borne infections first.  A very sick body can sometimes only handle so much at once.  Even if your husband does have Lyme, it could be a good thing to take the Bart down a notch before going after the Lyme.   I have been in treatment for 2 years, and I'm responding differently now to meds that I took 1 or 2 years ago.  My body was so messed up when I first started, some meds just weren't metabolized properly or were somehow blocked.  

One question would be if your husband had any Lyme symptoms that are not usually associated with Bart. There is a lot of overlap in symptoms.  I'm rather surprised to realize that a bunch of stubborn symptoms that I thought were Lyme turned out to be persistent Bartonella.  Bart was holding back my recovery for over a year.

If your husband also has Lyme, given how sick you describe him, I would guess he'd need years of treatment.  It's important to know that this is marathon, not a sprint, and it's not a straight line of recovery.  It's a squiggly line that goes all over the place, so don't be discouraged if you see new symptoms or setbacks after treatment starts. Everyone with late stage or chronic tick borne disease has ups and downs of treatment.  

I'm so glad you followed your gut!  I hope someday you can write and share about his misdiagnosis and recovery!
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Avatar_m_tn
I am so glad that I stumbled on this forum and decided to join. It does give me a glimmer of hope that my husband will finally begin to get treatment that may be able to help him. Thanks again to all of you that took the time to post. I really appreciate it and will continue to post as his treatment continues.
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Avatar_f_tn
I saw this article today and thought of you.  It's about a new commercial test that is finally available for Borrelia Miyamotoi.  It is a different species of Borrelia than Lyme (Borrelia Burgdorferi) and it usually causes a relapsing fever along with Lyme-like symptoms.  

The CDC announced last year that b. miyamotoi had been found in New England patients and that they all tested "negative" for Lyme Disease.  Who knows how many people are suffering with it!

You might bring a copy of this to your husband's doctor to ask about getting him this test.

http://www.businesswire.com/news/home/20140115005276/en/Lyme-Disease-Bacteria-Borrelia-Miyamotoi-Reliably-Diagnosed#.Utg0pn-9KSO
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Avatar_m_tn
Thank you…I will do that
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