I am quitting all my antibiotics....

[soxfan]

So I have been treating a Bartonella infection...at least that is what the doctor believes I have. I had been breaking out in red streaking rashes on my back and front chest area which would then scab over and leave scars.
I showed pictures and the actual rash to my doctor and last October put me on Bactrim/Zithromax combo. I was on that for 3 months with no resolve on any symptoms at all and the rash was even worse.
He then switched me to Rifampin/Levaquin and the rashes have totally disappeared since March but I still have the symptoms...Not even a one percent reduction.

I still suffer from chronic tiredness....nerve pain...chronic mental overstimulation which can happen very easily and leads to debilitating fatigue where I end up in bed laying quietly for the entire day...poor sleep...

I just feel that if these were truly caused by Bartonella I would have noticed something....I am done.

 

[justy]

Hi Soxfan - the rashes etc sound like classic Bart. Rifampicin is certainly a good drug to treat it - but it can take a long time. How long have you been on the Rif for? any herx? I have bart and felt crazy mad paranoid on rifampicin. KDM told me this is a normal reaction, but I felt so out of touch with reality I couldn't take it at all.

Whatever you decide to do - good luck and I hope you do OK.
xx

 

[Martial]

The rashes (streak like, scratches) are definitely tell tale signs of Bartonella infection. That being said it is a pretty complicated infection, especially seeing as it was most likely contracted with other co infections. You can treat Bartonella without antibiotics though, check out Buhner's book "Healing Lyme and Co infections; Mycoplasma, and Bartonella.".

Levequin is a qiunoline based antibiotic, those can trigger separate issues all on their own. For that reason it is probably good you stay off of it anyways.

 

[Sushi]

He then switched me to Rifampin/Levaquin and the rashes have totally disappeared since March but I still have the symptoms...Not even a one percent reduction.

Rifampin can reduce cortisol levels by shortening the half-life and speeding clearance. I was on it for a looong time and recently stopped as my cortisol levels were scraping the bottom of the chart when I was tested. I was very tired. My doc told me that cortisol should return to baseline in about 3 weeks.

Best wishes,
Sushi

 

[barbc56]

Hi @soxfan

I am not a medical professional but maybe a second opinion is in order?

You may indeed have had Lyme and it's cleared up, you have post lyme syndrome that calls for a different treatment or you could also have something else going on at the same time and the symptoms easily get conflated.

While there are no guarantees, a second opinion might give a fresh perspective about what is going on with your health.

Good luck and keep us posted.

Barb

 

[sarah darwins]

You can treat Bartonella without antibiotics though, check out Buhner's book "Healing Lyme and Co infections; Mycoplasma, and Bartonella.".

Has anyone here had success with holistic / herbal approached for Bartonella?

 

[duncan]

soxfan, I, too, would encourage you to make sure no co-infections are just below the surface, compounding your treatment difficulties.

Barbc56, just a quick note: Bartonella is not Lyme. As for PTLDS, there is no CDC-recommended treatment. I do agree that it probably would not hurt to get a second opinion, though.

 

[heapsreal]

Im throwing it out there because I have had problems with it and when u say a rash that scabs up as well as nerve pain and tiredness, it struck a cord with me it could be shingles or worth ruling it out??

I could be totally wrong without seing it but just having a guess??

 

[Valentijn]

He then switched me to Rifampin/Levaquin and the rashes have totally disappeared since March but I still have the symptoms...Not even a one percent reduction.

I still suffer from chronic tiredness....nerve pain...chronic mental overstimulation which can happen very easily and leads to debilitating fatigue where I end up in bed laying quietly for the entire day...poor sleep...

I just feel that if these were truly caused by Bartonella I would have noticed something....I am done.

I've had a similar experience - I have the rash, and starting on new antibiotics (mostly pre-diagnosis) has triggered it on several occasions.

First of all, treatment can take a while. Bartonella loves to hide in tissues, and might take a while to clear out.

Secondly, the treatment itself might be making you feel worse. I get some neurological side effects from some antibiotics, in addition to fever, hypotension, and exhaustion. Hence your ME symptoms could conceivably be doing better, but are being masked by the side-effects of the antibiotics and of your body fighting the infection or cleaning up the aftermath.

There's really no other explanation for the special red wriggly wormy marks we get. I hope mine go away too, though I fear some are too old to disappear. I know it's hard, but I think it's good to stick with the treatment for longer, especially if your doctor thinks it's best to do so.

 

[soxfan]

@Valentijn - This is like my fifth or sixth go around treating Bartonella. Maybe I am quitting too soon but with everything feeling worse but my rash marks disappearing I feel that the remaining symptoms are my CFS. I mostly have really bad mental fatigue with just very little stimulation....not much energy to walk....

I have been on all different combos for this as well....not sure what I should do even though I have already quit my antibiotics without telling the doctor....

 

[soxfan]

To all.....I have been on Rifampin this time around for six weeks but have been on it at least four or five times in the past 6 years all in combination with another antibiotic. I at times feel totally out of touch with reality and feel super strange. I am not even sure if I had any herxing..I will say the fatigue has been worse along with the mental fatigue and the nerve pain. I just don't know anymore.....

@Sushi- I didn't know it could lower cortisol...I am so tired within hours of getting up in the morning. Usually this doesn't happen until 2 or 3 in the afternoon.

I guess the abx had to have done something since the rashes have stopped appearing but I still feel really bad....my entire back is probably permanently scarred from all the "scratch" marks.

Maybe I will email my doctor and ask what he thinks....

I am really certain the Lyme is gone....the symptoms I have know are different from when I was treating Lyme. I am sure it was the IV Rocephin and other orals that got me well back in 2008.

 

[soxfan]

@heapsreal- The doctor saw the rash and said in his opinion it was Bartonella....especially how it comes and goes in different places on my torso. Right now I am completely clear for the first time in about six months....