New LLMD, yay for bartonella

[Drew967]

Hey everyone. I've been posting on here for a couple months, got a positive Igenex lab last November. Been on doxy 100mg BD.

I just saw a new LLMD yesterday who has a ton of experience, and wanted to get his take since I'm less than convinced that the doxy is doing it for me. This guy was amazing, really knew his stuff and a firm believer in antibiotics (not a quack!). Anyways, he diagnosed me with bartonella based on my symptoms since lab testing is unreliable.

I'm now on 100mg minocycline bd and 600mg rifampin. Since we think I've only been sick for 5 months, he thinks I have a good chance of recovering in 2 months, but will need to treat for at least 4. I'm really hoping he's right, because this constant muscle pain needs to end.

Can anyone share experiences on rifampin or recovering from Bartonell in general? I'm a little nervous because I don't see a whole lot of people on here being like "yeah I took rifampin and the awful chronic pain is gone!" I guess some hope that I can be pain free again would be greatly appreciated. Thanks for reading.

[Ricobord]

Muscle pain can also be caused by Bartonella, and it can be surprisingly bad (from what I read... I feel lucky to have dodged this symptom).  Are you on an herbals for Bart? I'm finding them to be quite powerful.

And don't forget the detoxing.  They say warm epsom salt baths are especially good for muscle pain.

[LazyMoose]

Could you give a little more detail on your muscle pain? That was / is my worst symptom for many years. From neck to feet, worse on my left side (shoulder , leg, foot).

I have learned trigger point release and a self form of active release that is slowly eliminating muscle adhesions , knots and tendonitis, I do this aggressively 20 min every day. It hurts so good.

Strangely there isn't a whole lot of people with really bad muscle pain.

[Ricobord]

I had Lyme herxing only on Bicillin and Rocephin, not on oral meds.

I had awful Babesia herxing on everything I took for it.

I've had more Bartonella herxing from herbals, but not from prescriptions, even though prescriptions helped over time.

Not everybody herxes.  If you don't see any improvement in a month, then maybe you need a different med.  Sometimes improvement is so slow, you don't always notice it until one day you look back and realize how much better you are than when you started.

[mojogal]

No, you don't feel permanently better from a herx. It basically is a flair, or a temporary worsening of your symptoms then you might feel better and it sometimes cycles. Every 3-4 weeks but not always. From what you described I think you are herxing.

[Drew967]

Thanks for sharing your experience! Ugh I want this nightmare to end. Did you ever herx on your treatment, or did you just notice symptoms fading away? I guess I'm sorta concerned I'm not herxing yet... I just wish I could have some sign that the treatment is working. This bug just can't be invincible to everything I throw at it!

[cave76]

I has no allergic reaction to Rif.  I just couldn't tolerate it and believe me I've had lots of abx that were no walk in the park. The best I describe it is----- I could barely walk, think or do anything else. Flagyl did the same thing to me.

Cipro and Levaquin were every bit as 'dire' for me as what many people say and deserve the many class action suits taken against them.

I was told to 'beware of Achilles heel problems. Didn't have that but had tendonitis in  EVERY other tendon in my body. Which has not gone away many years later.

{What's strange is that Cipro and Levaquin didn't affect my mind or whatever as bad as Rif. Wish it had because I would have quit them in a week or less.}

However---- some people love them and they helped them.

I still show positive for Bart. And my tendons still ache, throb.

[Drew967]

Thanks for the reassurance! I seem to be doing fine on the full dose so far. One thing that's always puzzled me is that I don't think I ever herx on meds. I go through flares of feeling worse, but to me it seems like that's just the disease doing its thing. Or I just can't really tell what's a herx and what's not. Aren't you supposed to feel permanently better after a bad herx? For me, i've felt incredibly terrible, then pretty good, then back to the normal crappiness.

[Drew967]

So, my doctor thinks I was infected sometime in July of 2013 since I do remember a distinct bug bite during that time and had no symptoms beforehand. I totally agree that it may take a long time to recover, and I'm all too familiar with how slowly my other symptoms improved.

It sounds like you went through a few drug combos to get well - why did your LLMD switch them up for you? Did you somehow know your treatment wasn't progressing or something? Or is it just the norm to switch them up after a while?

[Drew967]

Interesting, thanks for the info. So when you say you couldn't tolerate Rifampin, was it an allergy issue or something? How have the fluroquinolones been working for you? I've heard there are some pretty serious risks with that drug (not sure I believe how dire people make it out to be), but have they helped?

[Ricobord]

So glad you found a doctor you're happy with! That is key to recovery.

When I was first diagnosed with Lyme and Bartonella, I was on Rifampin for the Bart. It didn't seem to do much for me.  I switched to Levaquin and that worked much better. I really felt better on that.  But I had to stop taking it after 2-3 months because of tendon pain.  

We thought the Bartonella was gone after a total of 6 months of treatment, but a year later, new neuro symptoms showed up that my doc thought might be Bart.  Within a couple months, I had a roaring relapse of Bart.  We've been going after it hard for several months now.  I'm on a higher dose of Rifampin and some herbals. The herbals cause more herxing than the Rifampin, so again I'm wondering how effective the Rifampin is for me.  It is the first choice drug for Bart and works for many people, so odds are good it will work for you.

While my case isn't much like yours (I had it 6 years before diagnosis and my symptoms are different), be warned about relapses.  They are not uncommon with Bartonella.  It can seem to be gone and then pop up again later.  Given my experience, treating it for at least a couple months beyond when you think you need to is a great idea.  

My symptoms have been anxiety, tingling/stinging skin (scalp, neck, hands, arms, & legs), blurry spot in one eye, stomach pain, and intestinal upset.  When I was at my sickest, it really messed up my liver.  My symptoms abated slowly.  I agree with wonko that I didn't wake up one day thinking symptoms were gone.  They just fade away and one day I realize I haven't had a particular symptoms in days or weeks. Once in a while, one comes back after being gone for a month.  

I feel lucky that I haven't had the muscle or joint pain, but I've had plenty of GI pain instead.

While ticks do carry Bartonella, some experts believe that a whole lotta people are walking around with under-the-radar symptomless Bartonella, which doesn't become a problem until something else happens that allows it to flare up, such as a Lyme infection.

While you may have gotten Lyme only 5 months ago, you could have had underlying Bartonella before that. I wouldn't be surprised if that's my experience, but I'll never know for sure.  And so don't be too eager to stop treatment for it when you think it's gone.  If your doc is confident the Lyme is gone, then it's much easier to decide to stop Bart treatment, as without Lyme, a healthy immune system can usually take care of Bart.

Assuming your infections are indeed 5 months old, your odds at a complete recovery are high!  Just don't undertreat.

[mojogal]

I have been sick 22 years. I was on the same amount of rifampin but it took me a few weeks to get to that dose. I went up slowly because of bad herxing.

I treated with abx for 18 months and just switched to Chinese herbs. I also just sent off tests to IgeneX to see if Lyme is still there.

Don't be discouraged if it takes longer to get better.

[wonko]

I wish I could say that I got better fast.  I can't.  But I did get better!

When you say you've been sick for 5 months, do you know that is when you got infected?  If so, then I'd also be cautiously optimistic for a relatively fast recovery.  Some people get infected, but don't start to feel sick until much (years) later, which could lead to a more complicated situation.

I took rifampin and mino during my treatment, along with a lot of other oral antibiotics, over the course of about 3.5 years.  And I didn't wake up one day feeling great, instead it was slow improvement and even after treatment I have lingering issues to deal with, though they pale in comparison.  

Treatment is not a race, the important thing is that you are on a path to get better!  Glad you are happy with your LLMD, finding a trusted provider is also a huge part of getting well.

I hope you are a fast to treat case, and don't get bummed just because some of us took longer.

[cave76]

If you've been sick for 'only' about 5 months then the chances of you recovering are much much better than those of us who waited for a year or more to start treatment. So good luck with that.

I was treated for Bart (with fluroquinolones) for a many months. Still test positive.

I couldn't tolerate Rifampin but if you can (and many can) then that may be the drug for you.