bartonella

[timmysmom2005]

Hello everyone. I was hoping that some of you out there might be able to tell me what the long term effects of bartonella are. I was diagnosed with bartonella 9 years ago when I was 18. At the time I was treated with erythromycin and then I never had any follow up. I didn't intentionally not follow up, I was not told to come back. Just to take the antibiotics and I'd be good to go. However I have had ongoing problems for years that had led me to believe I had fibromyalgia because all the symptoms I have fit into that disease. I am going to see a rheumatologist soon to be tested. When I was posting some questions on the fibro forum, someone asked me if I had ever been tested for lyme, and that was the first time I had thought of the bartonella in years. I'm wondering if anyone can tell me what the long term symptoms would be. I tried to google some info but just keep getting stuff about cats and cows (lol) Can anyone help? Thanks!

[tpops25]

Thank you so much for the kind words. I am saving to get all the co infection testing. I don't have alot of money so it has been hard to get everything together. When I find out anything I will let you know.

[JackieCalifornia]

There are charitable organizations that can help fund testing and treatment for Lyme disease for those who can't afford it currently.  

One of them is called LymeTAP and the other is LymeLight Foundation.  They have websites with information about their funding approaches.  

Don't be shy about contacting them -- there's nothing wrong with taking their help, and when you are well again, you can send a donation to them, if you are able to do so.  I remember well how Lyme takes over one's day-to-day life, and how wonderful it is to be well again.  Sending you all good wishes!  Keep us posted, okay?

[JackieCalifornia]

Welcome to MedHelp Lyme.  

When I had Lyme, I went to my ophthalmologist for a regular check up and told him about my Lyme diagnosis and treatment, just so he was up to date.  I was surprised when he didn't dismiss the whole Lyme thing like many docs do, but it turns out that ophthalmologists (among all the different kinds of MDs) really do take Lyme seriously.

From what I understand of your situation, I would go back to the ophthalmologist you saw all those years ago, if s/he is still practicing, but if not still available, then I would find another ophthalmologist for a work up.

Part of the hassle with Lyme is that some of the docs who should know how to recognize and deal with Lyme just don't 'believe' in Lyme as something serious.  Unfortunately, neurologists are quite often in the non-believer category and many just blow you off.  (If I were to need to see a doc about Lyme now, I would *not* go to a neurologist:  my personal conclusion about how clueless neuros are.)

I would start with an ophthalomogist, to be sure your eyes are taken care of properly, and at right away also see a Lyme specialist who is on the same wave length as the ophthalmologist.  It sounds like you have been carrying around a case of Lyme for a while, so I would definitely see a serious Lyme doc, and do it sooner rather than later.

If you need help finding a Lyme doc and an ophthalmologist, you can contact local Lyme disease groups (you don't say where you are located) and/or contact -- ILADS [dot] org -- for referral to a Lyme doc.  I'm guessing your new Lyme doc and your new eye doc will have a lot in common and can work together to confirm diagnosis and plan a treatment approach.

Don't be afraid of this -- in fact, it's GOOD that you have figured this out!  Let us know how we can help, and also how it goes and how you do, okay?

(Neurologists are known for being very stubborn about Lyme.  The inclination for a neurologist and other non-Lyme-docs to blow off Lyme and call it fibromyalgia makes me want to scream.  'Fibro' is a description of symptoms:  fibro = fibers and myalgia = pain.  Therefore:  'painful fibers' in your body, but that says NOTHING about the cause of the symptoms.  Some docs will tell you it's all in your head too ... but don't buy into that unless and until you see a serious Lyme specialist and have a thorough work up, okay?)

You may be right about having chronic Lyme and/or bartonella and maybe something else too ... a Lyme doc will know what to test for and how to treat.  Be not afraid!  You are wise to be addressing this situation.  Keep us posted, and let us know how we can help, okay?)  

Best wishes to you!  We're in your corner!    

[tpops25]

This is amazing information I am 27 and had bartonella that hospitalized me at age 5. I am now having all these issues like the rest of you have described they even thought I had ms because ny optic nerve has thinning...when they did all the testing everything was negative for ms. Now they are saying Maybe it is fibro and the neurologist dismissed me because it isn't "neurological enough." Which is weird to me. Is it possible it is a confection or chronic lyme/bartonella ? I work full time and I am tired of feeling crazy and in pain and tired all the time.

[firemanswife21]

Patsy is right, the fog is more like just a bit of unawareness of your surroundings. Not a lot of emotional reaction. Kinda like if your on cold medicine and just wake up from a nap. Just a litle bit out of it. But no loss of time.
I get these episodes of time loss too. Lyme disease effect your memory in a lot of ways but in my case it really got to my short term memory. I'll be talking to my husband and he will be telling me something then wait for an answer from me and and I'll start on some thing else. because I dont remember or know he was talking to me.
Good for you that you can still do the dishes!! And laundry!! I know there are a lot of us Lymies that would love to be able to do the dishes and laundry! Personally my hands hurt to bad to pick up the dishes and I cant handle the hot water. Landry I can do but it takes me so long to switch the clothes. After just a couple clohes carrying them the short distance from the washer to the dryer is exhausting and my arms want to fall off. :( I am very glad you can still do household chores!

[patsy10]

I don't get much fog anymore but when I did get it, it was like being hung over or just really sleepy like you were up all night and didn't sleep. It's hard to describe.

[Kaydey]

I am not clear to what the 'fog' is.  Is it being in a state of haziness? or losing time?  I sometimes lose 3-4 hrs that I don't know what happened, that time is completely gone.  I can be washing dishes and then all of a sudden realize I am doing laundry, look at the time and realize that hours have gone by and I don't know what has happened.

[firemanswife21]

Hi and welcome to the forum! The lasting effects of Lyme are different from patient to patient. How ever most present them selves much like fibro. But keep in mind fibro patients can never really prove thats what they have. It is actually a grouping of symptoms that they can not find the true cause of it. With fibromyalgia you have to have I think 11 out of the 18 or so tender points. Check that out, have someone push on those points on you and if you hurt really super bad on all of them then you could start on medication for the symptoms. But Chronic lyme patients, some could take years and years of taking antibiotics to get rid of it, can appear like fibro, altho most do not have the tender points. Here are some general symptoms that I have( I have chronic lyme)
fatigue
headache
difficulty sleeping
all over both sides of body muscle aches/soreness
heat and light sensitivity
over all weakness
joint pain and stiffness - If I kneel for over 2 minutes or so I can not get up
bone pain
irritability
lack of consentration
memory loss
Basic all day fog
And every day is completely different, almost every hour changes.

Hope this helps. :) And hope you feel better

[wonko]

I have a diagnosis of bartonella as a Lyme co-infection.  I don't have much to offer, just that I think if you have both Lyme and Bart, a "Lyme literate" physician (or LLMD) may be able to help you.

[patsy10]

Welcome to the Lyme forum. Bartonella if often a co-infection in lyme disease.  Here is a link.




http://www.stopticks.org/ticks/bartonella.asp

[JackieCalifornia]

Did you try googling "lyme bartonella"?  That way you'd pick up the websites that aim in that direction.  

I also dont' know if the ILADS website has data about bartonella.

Sorry I don't know more about bartonella itself.