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Dr. appt. - not sure about this change???

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Posted 7/7/2015 11:36 AM (GMT -5)
I've been off antibiotics since end of April due to high liver enzymes. This is after 10 months of antibiotics.
(The liver enzymes were slowly creeping up for several months)
I have been wanting to treat with Rifampin since last January. But, my LLND wanted to wait. If I had started in January before my liver enzymes were too high, I may have been further ahead by now.

But, I have been continuing with JK, Sida, Hout, Crypto.
End of May my liver enzymes were all back to normal
end of June - two of them climbed up again, but not as bad as they were in April

Last appt. a few weeks ago, I told him that I was slipping - I had an increase in my symptoms and he told me to add Cat's Claw back in and up my JK, stop my Sida. (One of my symptoms - foot pain which was previously better, had come back) - I think he said that the Sida can be hard on the liver?

LLND appt. this morning -told him that I haven't slipped more, but I'm still where I was a few weeks ago - we discussed my liver enzymes...and he decide to prescribe minocycline. He went on to say to stop the CC, JK and Houtt.

When I told him - that means I've stopped all my Bartonella herbs, what about Bart? He said mino will have some effect on the bart...and then in a month, we will look at adding Rifampin.

Does this make any sense? Do you think the bart herbs are affecting my liver?

He also is sending my some liver support:
1) Liver H17 (I can't remember the full name)
2) a homeopathic remedy for my liver
3) told me to switch my Organika brand Milk thistle to Natural Factors - a phytosome form.
4) continue to take my ALA and L-Cysteine

I'm happy to be on the mino - I've been wanting to try it for a while now...but really questioning the stopping of the bart herbs.
Posted 7/7/2015 12:01 PM (GMT -5)
How bad do you feel your Bart symptoms are? You mentioned foot pain, is it really bad foot pain? And any others?

If you are experiencing a lot of Bart symptoms, it sure seems counter-productive to be stopping all treatment for it!! My understanding is that Mino treats Lyme??? Having "some" effect on the Bart isn't what you need at this time if you are having lots of Bart symptoms.

Hopefully someone with a better understanding of the pharma abx will chime in soon.
Posted 7/7/2015 12:33 PM (GMT -5)
Trav - I have been treating lyme since last July, also a month of cyst busting with Tini. and using bart herbs since end of December.
And I am left with quite a few symptoms - lyme and bart.
So, I've wanted to try antibiotics for bart to see what happens.

My foot pain is medium - bad. Worst in the morning - like my feet are pieces of wood - they are stiff and also sore.

I have had rib pain front left side - it is a lot better now
I have had an issue with a clavicle lymph node - that is usually gone - it appears every once in a while - like once a month.
Nervous system vibrations - they are still here with me
Shivers - they seem to be worse.
I also have a lot of body pain - I read once that it could be bart.

My rib pain has been front left side...it's a lot better, but the past three days, I have had the feeling like my mid back is locking up -on my right side - rib area.

My muscles have started twitching again...but that could also be lyme.
I have joint pain, as well - probably lyme.

I have been wanting to go on Mino - I just am questioning the stopping of the bart herbs...maybe he thinks I'm not responding enough...and wants me off to lessen the load on my liver...and will put me on Rifampin...

It's hard communicating with him on the phone - I'm often asking him to repeat what he said...I guess he's on speaker phone...and it's poor quality.

I get the impression he doesn't spend any time prepping for the appt. He goes from one appt to the next...so sometimes he even forgets what I'm on...etc.

You're right - mino is for lyme...maybe has a slight effect on bart.

But, going to a different Dr. - I wouldn't choose the other ones over him.


Most people I talk to are happy with him...I am not easily pleased I guess...I'm kind of a particular, fussy person in some ways....

So, I've resolved it in my head...I will get another set of labs done in a week...then start Mino...test my liver function again 4 weeks later...if good, I will go back on Bart herbs - unless Dr. C. starts rifampin
Posted 7/7/2015 1:29 PM (GMT -5)
Girlie-

Did you know you had Bart right away or did it take awhile before you figured it out (or maybe you tested for it?) ... It sounds like Rifampin has to be combined or resistance occurs??? Mino is great for getting into the CNS and brain...i think its very similar to doxy...

What form of Cat's Claw did you add (tincture/pills)? Do you think that is what stopped your "slide"? That seems to suggest it was Lyme that was coming back...not sure if cc has any Bart ...although with these co infections, who really knows what is what. I blame the testing...if there were accurate tests that could tell you how infected you were (amount of bacteria/etc) and what strains..might be easier to treat . Im asking for way too much i know.

Post Edited (daddylonglegs) : 7/7/2015 12:35:16 PM (GMT-6)

Posted 7/7/2015 1:36 PM (GMT -5)
Girlie,

I've rotated from 100% pharma, to a mix of herbals, back to pharma, now back 100% herbals. Rotation is good until you find a combo that works for you.

Not sure about what herbals are toughest on liver. I had elevated AST/ALT three times and only stopped treatment for a short time on the first occurrence.

One of my best Rx combos ever was Mino, Rif, and plaq.

later
Posted 7/7/2015 1:55 PM (GMT -5)
Sounds like you have a pretty good plan, actually!
Posted 7/7/2015 2:22 PM (GMT -5)
From Wiki:

The most serious adverse effect is related to rifampicin's hepatotoxicity, and patients receiving it often undergo baseline and frequent liver function tests to detect liver damage.

Doc probably wants liver in tip top shape i would imagine before giving this drug.
Posted 7/7/2015 2:23 PM (GMT -5)
Thanks Trav:
I'm having trouble with deciding what to do...the different ways to approach it - too many variables. I like things to be clear-cut - I'm not a wishy-washy type of person.

Before you say something - don't tell me to just do what the LLND says...lol.
yes, he's LL, but he's got too much going on...in my opinion...to just hand myself over to him...when he is forgetful about what I'm taking on several appointments...I lose faith. He should at least familiarize himself with my previous appt. and KNOW what he asked me to discontinue, and what he added. If he's unsure, then it's not that formulated...it's a crap-shoot as far as I'm concerned. If I didn't remind him of what we discussed last appt. - then the protocol from today on would be totally different.

I'm spending more time reading, researching, going through my symptoms and what happened when - than he is...so i can't just blindly follow him.

Tickbite - AST has never been one of my liver tests...don't know why. I get ALT and bilirubin everytime...and for a few months, my GP ordered ALP and GGT- when she wanted a closer look at what was happening.
I started abx beginning of July last year and the ALT was in range until end of October, and after that steadily, slowly climbed to 101 in April (range is < 50) I don't know if it was an accumulative effect of antibiotics - or the addition of biaxin end of September...or the addition of Ceftin end of November....

My GP says she's not too concerned with the numbers at this point as she feels those numbers aren't too bad...but it's the fact that they continue to climb.

Daddylonglegs - We have suspected bart from the first LLND appointment. I didn't test for it. The nervous system vibrations and the rib pain and foot pain. Actually the foot pain didn't appear until after I started treating lyme for a few months. Oh, and a lymph node that is sore and swollen (left side clavicle). I don't really know what stopped the slide - I didn't get better, I just didn't get 'more worse' - aggggh - it's so difficult to explain it all...

My symptoms fluctuate daily, weekly etc. anyway...so it's been really hard to track progress, herxes, flares, etc..
Posted 7/7/2015 2:26 PM (GMT -5)
Daddylonglegs - I have been aware of Rifampin and the liver...and that's why I wanted to go on it earlier - before my liver enzymes continued to go up.

If I had gone on it in December after 6 months of lyme treatment...instead of continuing the assault on it with the other abx - including Tinidazole (after Tini, I had the highest test)


We just keep postponing the rifampin and my ezymes go up anyway.
Posted 7/7/2015 2:27 PM (GMT -5)
Can anyone tell I'm frustrated! treatment burn-out?
Posted 7/7/2015 2:44 PM (GMT -5)
Ha ha ha - honestly - Since I have the privileged of knowing you off forum - I was going to tell you that you likely know enough about the infections and enough about your own body and it's reactions to these things that you probably could do this on your own now!

Seems that although you may be dealing with a little treatment burnout, you may be more frustrated with what's happening rather than just treatment burnout.
Posted 7/7/2015 3:06 PM (GMT -5)
Girlie what homeopathic remedy did your LLMD give you for your Liver? I take the Pekana line of products. apo-Hepat is for Liver and gallbladder dysfuction. If it isn't that, can your LLMD get that? If not is there a Naturopathic Dr in the area who you can get it from?

My kidneys plummeted in September. My eGFR was in the mid 30's. My LLND put me on Renelix which is the Pekana Kidney product and my kidneys rebounded to above normal.

Re Bart-Mister Mike did a post asking about Best Bart abx. We've all taken Rifampin(2 pills at the same time each day) + at least another abx. I think he decided to go herbs. He posted a long list of what he's doing.
Posted 7/7/2015 3:19 PM (GMT -5)
Thanks Trav - I think you're right - just frustration.

jrpsf - Apo-HEPAT is the name of the homeopathy remedy for my liver. He actually mentioned last appointment that he was sending me a Pekana product for my liver...and it never came...I guess he forgot (not suprised)

I'm glad to know that it's a good line and you had success with the Pekana products for your kidneys.

I have been taking Buhner herbs for bart - JK, Sida, Houttuynia, Hawthorne... but he told me to stop them for now.

boo boo mad
Posted 7/7/2015 3:37 PM (GMT -5)
The Apo-Hepat should do the trick for your liver pretty quickly.
I know that you've had trouble with dosages of abx's in the past. If you can get your LLMD to also put you on Renelix and Itires (lymphatic) it might make a big difference. It made a huge difference for me.

I can also send you some Alka seltzer gold. I was only able to find it on Amazon. They only sell it in six packs. It will expire before I ever use six boxes.
Posted 7/7/2015 3:52 PM (GMT -5)
Thanks for the offer jrpsf - I ordered the Alka Seltzer gold from iHerb along with my Nutramedix Pinella and Burbur.
I haven't tried the AS Gold yet...hope it works. it should be here anyday now.
Posted 7/7/2015 9:47 PM (GMT -5)
I had a hard time taking Minocycline, stopped it after a day, felt drunk from it. He might be starting you slow on the Bart ANX, I think Lyme Pickle did Mino with Rfampin, where I'm doing zithromax with it. Except my doc started me on both at same time, Rif and zithro.

Who knows why they do what they do. I question my LD all the time, prescribing Coertum when I have no Babs symptoms.

Rifampin kicked my butt for several months, been on it since Feb 1 and I am over taking a drug every single day but I heard it can become resistant if you don't.

I am also doing chronic tonic, but some days I forget to drink 4 cups.

Bee venom is making me herx now, it's about the only thing that makes me herx so it is doing something.

Good luck and hope your liver is back to normal.
Posted 7/7/2015 11:24 PM (GMT -5)
Thanks, Sayya - but I was on JK for almost three months in 2014 - May/June/July and my liver enzymes were fine - so I'm pretty sure it's the antibiotics. The tini really exasperated it.

Revive - My LLND told me to start Mino - once per day for a week before going to twice a day. This is odd..because he has told me always with all other protocols - go to full dose immediately...and if I herx...stay on it...it will subside...he's never had me go low and slow before....he said I could get dizzy from it.

I'm concerned about permanent side effects...i googled Mino after my LLND told me that it can cause skin to turn a bluish colour - and it can be permanent...
I saw lots of other scary stuff on there, too - like autoimmune hepatitis, lupus.....

So, Revive - did you end up on the Coertum? (I think we might be spelling it wrong?) - or did you refuse to take it based on no babs symptoms?

Can you remind me how many days a week you take Rifampin?
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