So the intern that I just saw at Hopkins called me and said that all rheumatological testing came back negative( as I told him it would) and my Lyme test came back negative. He wants to do an official mammogram of the cluster of nodes under my arm towards my breast to rule out cancer (which I appreciate bc now I know he's listening to my emphasis on me swearing this is all lymphatic; be it infection or otherwise) and he wants to do a bartonella test since I was exposed to diseased cats numerous times at a local shelter. I said that a Bart's test sounded like a great idea since I had heard that it could be related to Lyme. He then said that "no, bartonella has nothing to do with Lyme". "It's cat-scratch fever and they are not related at all other than similar symptoms". I know they aren't the same, but they are related as in you can get them at the same time (coinfection, right?). Anyway, irregardless of the fact that he loves to talk to me like I'm a fool, at least he's thinking and testing! Are the results for Bartonella as difficult to read as Lymes? Also, he said the treatment for Bart is the same, doxycycline. However, I thought that I've read differently from you on here. What do you think??? Ps I'm still keeping my LLMD appt, unless mammogram indicates something else unfortunate.
Sounds like you are getting the hang of dealing with The Medical Establishment -- that's a good skill to have, as you are seeing. Good for you!
I didn't have Bart, so someone else will have to speak to your questions about how accurate the testing is or is not, and about treatment.
Even if the mammo comes back without totally good news, think about keeping the LLMD appointment. Better to know, imo, all the news so it can all be taken into account. (I had several scary episodes when I was younger than you are, not knowing if I had breast cancer, so I know that's a real slap across the face, but the docs are just being careful to follow all the leads till they are sure nothing is going on.)
So it's major overload to be dealing with two possible issues, but just hang on till the tests come back and then go from there. One step at a time.
There are 2 types on bart that show up on blood tests.
bartonella henselae (cat scratch disease) and bartonella quintana (trench fever)
cat scratch disease can be spread by cats, quintana is often spread by flea bites, but both forms are also spread by tick bites, sandflies and some other vectors.
There is another type common in south America.
There are currently at least 14 other strains for which there is no lab test at all. You can identify them all by the cymptoms and can gt a lab test if you find lab wich can do a smear test of blood as soon as it is extracted and look for the live bacteria inside your red blood cells under a microscope.
The CDC comment on bartonella is the following
Trench fever, Carrión's disease, and endocarditis due to Bartonella spp. are serious infections that require antibiotic treatment. Health care providers should consult with an expert in infectious diseases regarding treatment options.
it also says
A number of other antibiotics are effective against Bartonella infections, including penicillins, tetracyclines, cephalosporins, aminoglycosides, and fluoroquinolones. Since aminoglycosides are bactericidal, they are typically used as first-line treatment for Bartonella infections other than CSD. Often, with serious infections, more than one antibiotic is used.
So you could direct your doc to the CDC website to let him know his "knowledge" of this illness is out of date.
I am definitely keeping my LLMD appt, I just wish May 1st didn't feel so far away. I went to the ER a few days ago bc my neck and upper back completely locked up in pain, my hands turned grayish blue, then later i had full body tremors and fainted. I really thought I was going into shock at the time. So scary, but embarrassing when the ER doc tells me CBC looks great and sent me on my way with percocet because the flexeral (sp?) they gave me didn't have any effect. however the percocet was so overwhelming that i vomitted. i so wish my blood would just cut me a break and reflect how bad I feel, so I don't continue to look like a weirdo to the docs and actually get to the bottom of this!
Anyway, thanks for the advice on the Bart test and I will print out the info so I'll be we'll armed!
Also, mogogal, I am really at a loss how to explain my lymphatic pain to the doctors. It doesn't hurt when docs palpitate, per se... They just have this general ache, their very existence hurts. And they swell nearly one at a time sporadically for about a week, then shrink down leaving small bead sized cysts or cyst-like clusters. At first they are rubbery and weeks later are rock hard. This has been going on for two years and each time the overall lymphatic pain gets worse.
I'm sorry to hear you are having such a rough time --
If you can take photos (cell phone photos are good, as long as they are accurate in showing the situation) of the visible symptoms (like your hands changing color and the swollen lymph nodes), then take those to the doc. Docs seem to discount descriptions but not photos.
And you might keep a brief symptom log, like "Tuesday, [month and day]: hands turned bluegrey for ___ hours" or whatever works for you, then take that to the doc too. Some docs refuse to read things like that and insist that you TELL them, so in that case you can use the notes to tell the doc, and also show him any photos you have. Docs tend to minimize what they can't see and don't have hard data on. I find they don't like long and very detailed information, but short stuff they are more inclined to read. Also note what meds you are taking on that data log.
And actually, take two copies of notes with you, so if the doc says, "Just tell me", then you have a copy in your hands too and can use it as notes for your recitation.
Sounds silly, but doc management is, in own my experience, often difficult and also really important.
With brain fog I forgot that at the start my lymph nodes would just hurt on their own however I don't remember them shrinking down to little cyst clusters but I do have these little hard cyst like things now in different places which I wondered what they were.
I would explain to them just as you explained to me, the problem is you aren't going to get anyone to listen at the ER. They are worse than a regular doctor. I went a few weeks ago for passing out and after they rehydrated me, they sent me home. Tell them your lymph nodes hurt all the time I just wouldn't count on much response.
The "official" position on Bartonella by the CDC and the IDSA is that bartonella henselae is a mild disease that is usually self resolving (the immune system takes care of it without meds). When many LLMDs began pointing out that a lot of Lyme patients also had Bartonella, the "official" response was that, no, we do not get it from ticks, even though it is proven that ticks carry the disease. Apparently, the ticks carry it in a different part of their body than where they carry Lyme, so the assumption is that it can be transferred.
Gary Wormser, head of the IDSA Lyme committee and primary architect of the current Lyme guidelines, even got money from the CDC to "research" the claim. He read and studied available literature and came to the conclusion that there's no scientific proof that we get Bartonella from ticks. So, his opinion, which is now "fact" in the medical world. Your JH intern is merely regurgitating what he was recently taught, without knowing any of the controversy behind it. He's a classic example of the medical field where many doctors in training are told not to question, but to bow at the feet of their god-like elders.
In the meantime, Bartonella can cause remarkable illness. Sometimes I wonder how many vets with PTSD have Bartonella.
The IDSA and CDC are also dismissive of the claim that bartonella can cause neuropsychiatric symptoms, even though members of the American Psychiatric Association warned of it years ago. In me, it greatly worsened my neuro and GI symptoms and caused anxiety.
Your frustration in not being able to provide hard evidence of your symptoms to doctors is very common, and is considered by LLMDs a big reason why so many Lyme patients are dismissed as psych cases by their doctors. The symptoms are often vague.
Even worse, they wax and wane, and come and go. Doctors generally believe that if a symptom goes away, then it's not an issue and it's not relevant anymore. But this is a huge red flag for Lyme. Symptoms can vary day to day. Some symptoms go away, only to come back months later. General malaise and non specific pain are the norm.
What saved me from being dismissed is that I turned up a whole bunch of brain lesions in an MRI. I am deeply grateful that my neurologist didn't hesitate to order it. Without the lesions, I had no hard evidence of anything.
Because of the belief that I had a mysterious neurological disorder, my GI doc in the hospital didn't even recommend a follow up appointment for me even though I had severe stomach and liver/gallbladder pain and my gut sounded "like World War III", according to one of my nurses. Later, a GI analysis run by my LLMD showed extensive gut problems, including pancreatic insufficiency, h.pylori, campylobacter, parasites, malabsorption, and microbe imbalances, including yeast. I think the only reason the GI doc ignored my gut symptoms is because he didn't want to touch my claim of Lyme Disease. He told me he knew nothing about it and couldn't help with that.
Sorry! I'm venting again!!
While I didn't have lymphatic pain, I have spoken with others who did. One woman I know said all her lymph nodes swelled up and hurt when she started IV Rocephin. She stopped because she thought it was a bad reaction and that she couldn't take Rocephin. But now, with all my reading, I think her already overloaded lymph system just got overwhelmed with dead spirochetes and toxins when the Rocephin started working. All I can suggest is that you do lots of research on detoxing and flushing out your system and begin practicing it now. It can help even before you start antibiotics.
Youvegottobekidding gave you some great info about Bart. She is an encylopedia of useful info and I've learned a lot from her! :) Many people with Bart test false negative. The biggest expert in the country on Bart is a veterinary professor at NC State. Just google "Bartonella North Carolina State University" and you'll see a whole bunch of interesting hits. His name is Dr. Breitschwerdt. He is currently working on a new culture test for Bartonella, as he said research is hampered by the unreliability of the current lab tests, which miss many cases.
If you do test positive, then definitely take Doxy for it. It'll get you started before you see the LLMD. Although, on second thought, you might want to call the LLMD's office to ask about it first. If they want to run a Western Blot on you, they want to know if you've been on abx in the month prior.
From what I've read, the CDC isn't even funding studies on Bartonella. (I could be wrong on this...) They admitted a few years ago that they weren't even funding studies to look at Lyme with a coinfection, especially Babesia. (Babesia is "owned" by a different group in the IDSA than Lyme is.)
Do you know if the Lyme test the doc mentioned was negative was an ELISA or a Western Blot? Make sure you get copies of EVERYTHING! Don't wait until you go to the LLMD. Have them up front. Don't worry about the negative result. LLMDs see them all the time. I had a negative IFA screening test, so I didn't even have a Western Blot until my IGeneX test. I didn't have a single band the CDC looked at except for 41, which most people have anyway. I did have two Lyme specific bands that the CDC ignores, so IGeneX said I was positive.
Apparently, people sick over a year with Lyme are more likely to test false negative as antibody production declines over time. The ELISA, from everything I can tell, was not tested on people with long term cases of Lyme. Numerous doctors have complained to the CDC that it's inadequate as a screening test as it misses at least 30% of cases, but it is still the official recommendation. *Sigh* My doc's PA said that it's often their sickest patients who test completely false negative.
It took me five months to get past the Bartonella. The first med I took was Rifampin. But it was adding to my stomach pain, so I was switched to Levaquin. It worked well for me. I could tell I felt better on it, and my anxiety went away. About 2 1/2 months into it, I had some vibrations and then a bad cramp in my Achilles' tendon, so we stopped. I highly doubt that your JH doc will give you more than a couple weeks worth if you do test positive. He's definitely working on old info if he's choosing Doxy first. It does work against Bart, but Rifampin and Levaquin are better.
Did you ask your LLMD to be on a cancellation list? They often have slots open up when people need to cancel or reschedule. That might help get you in earlier. You could also ask if it's okay to call in once a week to see if there's an open slot. Some offices encourage this. Others hate it.
They have a one day lab pull for about $400 but will process a three day pull (M,W,F) for the price of two $800. The reason why you want a three day pull is the chances of one day missing the bart is great. They have never had someone positive for all 3 of their draws in one week.
Interesting to read about the 3 day lab pull! This may sound extremely obnoxious, but I was given a lab slip by, what was supposed to be an LLMD, doctor yesterday for CMV and EBV (most of you read the story). I also needed to go to the lab for my Bart test ordered by the doctor at Hopkins that wants to do the lymphectomy. The lab can't find the order from Hopkins, so yesterday's doctor agreed to let me add it to the order slip just now. Question is... Now that I know that the 3 day test is more accurate should I not tell Hopkins that it was ordered by another doctor and tell them that the lab never got their fax, so that I can at least get a 2 day test? Is that at all too dubious???
I agree with what Ricobord said above. The mainstream tests are pretty much useless. I would get an igeneX co-infection test and not go for the surgery since the swollen lymph nodes are common in Bartonella.
I went through so many painful and unnecessary tests only to find out I had Lyme, Bart's and Babs.
Thanks! Great advice! The doc at Hopkins is still trying to schedule lymphectomy, so maybe I will see LLMD before it is scheduled. I think I read on another post that you are in northern va. I am just outside DC in MD. Any chance you have an LLMD to recommend? Message me if you can. I feel so bad that it would be great to get in with one sooner than May, but I know it's a long shot. since you're so close i wonder if you've heard of the office for my may appt. Anyway, I've done a lot of reading about Bart and agree that it is probably my main culprit with the lymph nodes, mood, brain fog, and gi issues. Do you know of any supplements that could hel with symptoms until I can get treatment? My lymph nodes are so enlarged that it hurts very very much to move. I am beyond done with the pain!
PS I am scared to deny the offer of the lymphectomy bc I was on a med 2 years ago (when all of my symptoms spiraled out of control) that has been known to cause lymphoma. I just can't have the thought of that weighing on the back of my mind and would love it to be ruled out once and for all.)
Here's my personal experience with Bartonella henselae:
I had Lyme (and was being treated for it) many years before Nick, at Igenex, developed a test for it and before the word 'Bart' was known. When my llmd had me tested for Bart at Igenex the results came back 'off the charts'!
I was perversely elated because I thought----- ah, all I have to do to feel better was treat for Bart.
So I, like the naif I was, took Cipro for it. I started getting pains all over (felt like it was in my bones/tendons) but persevered and was on it about 3 months or a little longer. The pains didn't go away after cessation of Cipro.
I got retested------ negative!!! Yippee! Still didn't feel good but I was willing to wait.
Next month I was retested (still with Igenex) and I showed up positive!!!
Because I have an extremely terrific insurance plan I agreed for more tests at month intervals. The results ping-ponged back and forth between neg. and pos. for about 5 tests. My llmd and I called it the Peek-a-boo test. Sigh.
I don't know what other might infer from that----- but I took home this message: No matter how good the lab, no matter what the test (for TBIs) you can't trust them. Maybe I should say "I" won't trust them.
To continue my experience----- I then agreed to a course of Levaquin!!! (Did I tell you I'm a masochist AND a naif?)
Same pains all over my body but in spades. And they're still around, or their cousins.
So----- be very careful about the quinolones (Cipro and Levaquin). Some people love them. Some never recover from their 'side effects'.
Levaquin worked great for me. I took it for about 2 1/2 months and stopped when I had a few days of subtle vibrations in my Achilles heel, followed by a couple nasty cramps in the same heel. I had surgery on my heels 30 years ago, so I have scar tissue there. The left one hurt a lot more and took longer to recover than the right, and I've always assumed more scarring on the left.
Anyway, my doc's PA said that Lyme likes scar tissue. Maybe Bart does, too. My doc gave me Biaxin and Plaquenil after the Levaquin, and he said Biaxin was an intracellular med that would be effective against both Lyme and Bart. I was thinking I didn't have a herx on it, but I saw some old notes that showed I had a day of heavy duty fatigue when I first took it.
My anxiety didn't come back after the Levaquin. A year later it still hasn't so I'm very optimistic that it's gone. Your ping pong test results sure sound like you've got some biofilms. Since I was well for months at a time in the first five years of my illness, I assume that both Bart and Babs were hiding out in biofilms along with the Lyme.
Have you tried any anti-biofilm supplements or meds?
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