question for girlie and bart

My symptoms started April, 2013..the Easter Weekend. Oh, how I remember it well...

I woke up from a nap after work...in excruciating pain - left side neck, shoulder blade, and completely limp, numb left arm.
Then more and more symptoms after that...which I ignored at first, but by the fall of 2013, I knew something was horribly wrong when I had vibrations in my body. (At that point I had about 10 symptoms)

I was diagnosed in July, 2014 - Igenex positive. my GP gave me two months of doxy, and I went to a NP and got a month of zithro.
Had first LLND apt. end of Aug. 2014. Unfortunately, he prescribed lyme only antibiotics until April, 2015 and then due to rising liver enzymes, I had to take a break . Back on abx in July, and added Rifampin end of August.
I have been on Mino/Rif or Biaxin/Rif since then except for another break of a few weeks last Spring.

I am still struggling. If I look at my symptom list - many have left (I think I had between 30 and 40 - can't remember - would have to check my notes) - I have less than 15 now I think...but my worst ones still with me - nerve pain, vibrations, shivers.

One of the more effective abx for bartonella (from what I've read) is the Fluoroquinolone class of abx (Ciprofloxacin, levofloxacin)
I would not take them (my LLND didn't even offer) - because they come with a black box warning - risk of tendon rupture, and more recently added Peripheral neuropathy (that can be permanent)

Another similar abx to Rifampin is Rifabutin. I am saving that if I feel I'm backsliding on the Rifampin.

Some people have used Bactrim with a macrolide (zithro/biaxin) - but from my experience it's often not effective for most people.
I think maybe if you haven't had the infection a long time - then the Bactrim combo would work?

I am going to a see my new LLND in a couple weeks - she is going to discuss what I've done and what my options are...she recently had a phone conversation with THE bart guru - Dr. Mozayeni. So, I'm interested in what she has to share with me.
Also, she is attending the ILADS conference.

hello girle, so you think my llmd will continue me with a strong antibiotic, my symptoms have diminished but still have a little tingling and my legs stil do get fatigued. does that get better eventually. this is a great supportive web site at times i get more worried reading everyones stories tends to scare me, when there not improving.

Just found article about Dr.Mozayeni:http://townsendletter.com/July2015/bartonellosis0715_3.html

Mustard Seed said...
Girlie, have you ever tried the Beyond Balance MC-BAR-1 or MC-BAR-2 herbals?

My LLMD had Lyme and Bartonella, and she says these were by far her favourite herbs she used to heal.

I've used the Beyond Balance Babesia tinctures (MC-BAB-2), and I had large herxes beyond 6 or 7 drops at a time... very potent stuff.

No, i haven't.

To order, I need a Practitioner for those, right?

Thanks MS - but I just realized my LLND has the Beyond Balance products - He sent me Parazomin awhile back.

No, I didn't...at the time I was doing rounds of Artemisinin. The Parazomin had Artemisia...and I didn't know if it was a good idea to take it with the artemisinin.

BBM - I stopped taking Cryptolepis because of the P450.

I still take Hawthorne...and am thinking of adding back in the JK and maybe Houttuynia.

On my list of P450;
Rifampin
Biaxin
Artemisinin
Cryptolepis

and I have Tini? (I think I wasn't sure about Tinidazole)

I stopped the Bart herbs because I thought maybe I was in a constant herx...and wanted to see if anything changed when I stopped them...and nothing did change.

I stopped cryptolepis after reading about the p450.


Now - one thing to note: LLMD's are prescribing Rifampin and Biaxin together - so the good must outweigh the bad..or they wouldn't. They must be aware of it.

This is what the Drug interaction report showed for biaxin/rif:

rifampin clarithromycin
Applies to: rifampin, Biaxin (clarithromycin)

Ask your doctor before using rifampin together with clarithromycin. This can alter your blood levels or add to the side effects of either medication. Call the doctor if you have side effects such as nausea, vomiting and diarrhea. This combination can also affect the eye and cause inflammation of part or all of the uvea, the middle part of the eye. You may need a dose adjustment or special tests to safely take both medications together. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.
====================================
I don't know what food is contraindicated with Rifampin?

After a 2 1/2 month break of abx (from out of range liver enzymes) - July, 2015, my LLND prescribed minocycline.
I started it at half dose for a few weeks, then went to full dose.
After one month from the start of minocycline, I was prescribed Rifampin.
My LLND told me to start it at half dose 300 mg once daily...and wait a couple weeks and get my liver function tests done.
I decided on my own to open the 300 mg capsule and fill an empty cap with approximately 1/2 the amount..and take approximately 150 mg once daily to start.
After 5 days of that and no issues, I went to 300 mg once daily for a few weeks...had liver function testing done, everything was fine.
Then went to 300 mg twice daily.

So, from end of September to end of November I was taking mino 100 X 2 and Rif 300 x 2 daily.
Occasionally when I was feeling awful, I would skip a day of Rif.

End of November, I switched the mino for biaxin.

Since then, Ive changed things up - I took another break last spring...I did a trial of CBD oil...
switched back to minocycline for a month or so...

And then in May (or was it June?) I started pulsing biaxin and Rifampin - M/W/F two or three weeks on and one week off. I add in Ceftin or Tini on Th/F.

In May I also started doing 'rounds' of Artemisinin. (haven't done any Artemisinin since September)

I don't see a problem with sida acuta with Rifampin.

I think you should have liver function tests done when you're on the Rifampin, though..


Regarding the food interactions - that page is talking about Rifinah (which is a combination of Isoniazid and rifampin. (a combination used for Tuberculosis)



Isoniazid 150mg
Because isoniazid has some monoamine oxidase inhibiting activity, an interaction with tyramine-containing foods (cheese, red wine) may occur. Diamine oxidase may also be inhibited, causing exaggerated response (e.g. headache, sweating, palpitations, flushing, hypotension) to foods containing histamine (e.g. skipjack, tuna, other tropical fish). Tyramine- and histamine-containing foods should be avoided by patients receiving Rifinah.

I believe it does work...I know people who have healed with Rifampin.

I have 'dropped' some symptoms since being on it...

It apparently affects the liver...and this could result in fatigue.

You also get orange colored urine.

Yes bactrim plus azithro (and also biaxin, I think?)

I don't think Bactrim plus a macrolide is as effective as the Rifampin combos...just wanted to add that.

Bactrim DS - I think it's 800 or 850 (i've read both) - 1 pill twice daily (I've never taken bactrim...)
biaxin - 500 mg twice daily.



I don't know if azithro is as effective as biaxin for bartonella.

But, it would be 500 mg twice daily

bluelyme said...
10 days of bactrim killed my nerves i was badly infected

Could you explain, bluelyme? What do you mean - it had a bad effect ...and if so...was it a permanent effect?

What i didn't like with bactrim was the risk of Steven Johnsons syndrome...it is rare, though.

But, when I looked it up, it freaked me out.