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New DX, 2 LLMDs, Can they work together?

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Posted 7/29/2018 1:21 PM (GMT -5)
Hi everyone,

So I recently got a firm dx of acute bart. + yersinia e. along with idiopathic MCAS and sjogrens due to the bart. This is from a LLMD in a clinic up in Mountain View, CA who are renown for treating many patients with lyme/cfs/fibro.-like infectious conditions. They work closely with OMI and Stanford on the latest treatments, research, etc. on chronic infectious diseases and ME/CFS. So I had to wait around 4 months to see her...which I'm told is relatively fast.

The thing is, I saw a LLMD with pretty high praise down in my local area in San Diego months earlier because I just couldn't keep waiting and my sx seemed to be worsening. He initially diagnosed me with bart. and yersinia along with possible SIBO.

They both prescribed similar treatments for bart which they are both sure on that I have but they differ on the treatment for yersinia which I decided to wait on to see what my SD LLMD tells me at my followup this coming wed.

The LLMD up in Mountain View was very extensive in her treatment plan and told me she is willing to work with my LLMD in SD. Now I need to relay that information to my SD LLMD...is this a good thing to do? I did stray a little bit from his original tx plan ...is anyone else in this kind of predicament? Is it helpful to have 2 LLMDs working together to treat you or does that create further confusion? They seem to be on the same page for my dx for the most part and since I can't see the MV LLMD in person as often (I barely made it earlier this month there...even a 1 hr flight almost killed me), I was wondering if my SD LLMD would be willing to just work together with her and establish some kind of harmony.

Let me know what you all think. I am so hopeful now for a full recovery...my LLMD was VERY sure I had bartonella and they said it was ACUTE. I was overjoyed...cried tears of joy at the appointment even as I was in the middle of an episode.

I'll also post my new tx regimen and progress going forward as I embark on this new journey...although I am still quite sick.. I finally see a light at the end of the tunnel. :').
Posted 7/29/2018 1:48 PM (GMT -5)
What was the treatment plan they recommended for treating the bart?
Posted 7/29/2018 4:12 PM (GMT -5)
Are you still on the Rifampin and mino?

I guess you could have two Docs but it may be a challenge as they may not agree on your treatment going forward.
Posted 7/29/2018 5:03 PM (GMT -5)
Some doc gets very upset at not being sole shot caller ...they may even refuse service for doubting price or seeing another ...just saying be open and careful or disclose nothing and go at ur own risk..
Posted 7/29/2018 6:05 PM (GMT -5)
You are in charge-getting two opinions is always good.

You do not need to tell each about the other-be careful with meds of course but input from more than 1 LLMD is very good.
Posted 7/29/2018 7:54 PM (GMT -5)

BuckeyeSDH said...
What was the treatment plan they recommended for treating the bart?

Rifampin 300mg (x2) + Clarithromycin 500mg (x2)
Serropeptase/Lumbrokinase/NAC for abx absorption
Clonazepam 0.25mg to calm nerves and pain
LDN 1.5mg to start then to 4.5mg for pain and fatigue
Claritin AM + Zyrtec PM for MCAS
Hydrocortisone 5mg for cortisol support
Liposomal Glutathione for detox
Mike thistle extract for liver support/detox
T3 Liothyronine 5mcg for thyroid support
Magnesium Threonate for neuro support
Probiotics support (twice a day)
Melatonin 10mg
Vitamin D/K (2x)
Vitamin C 1500mg

It's a lot of pills a day... but my latest LLMD was very thorough to help not just kill the bacteria but the treatment plan is built on a 5-fold approach:

1. Kill bacteria - abx
2. Break biofilms/Increase absorption
3. Detox
4. Immune support
5. Hormonal/Body Support
Posted 7/29/2018 8:08 PM (GMT -5)
@Girlie, My latest LLMD told me to discontinue mino and start with clarithro (biaxin) because that is the protocol Dr. M, Dr. H, and other renown LLMD's use for bart. Also it's a little more gentler on the stomach than mino..which I have definitely noticed. Also... this may be a bit random..but I love the smell of the biaxin pills...gives a hint of vanilla...I miss ice cream =[.

Post Edited By Moderator (Girlie) : 7/29/2018 11:38:05 PM (GMT-6)

Posted 7/29/2018 10:13 PM (GMT -5)
Out of curiosity, do you know how you contracted bart?
Posted 7/29/2018 11:48 PM (GMT -5)

acarined said...
Out of curiosity, do you know how you contracted bart?

Dr told me it could have been anything...flea, tick, mosquito, apparently there are many known vectors for bartonella. I tested positive for 2 popular strains: henselae and Quintana. Henselae is also known as cat scratch disease and many people have reported getting it from getting bitten or scratched by a cat...but wasn't the case for me. Never owned a cat, never remember getting bitten by a flea/tick/mosquito...all I remember is getting suddenly very sick after eating raw fish in Korea and never quite getting better afterward and progressively getting sicker. So we even guessed maybe something in the fish? Regardless, multiple lab results came out very pos for bart and yersinia...

my LLMD told me I was >1:256 for bartonella Hens. IGG with quest dx and out of the 200+ patients she treated with cases of bartonella she's only seen a couple actually test positive on Quest's bart test. That was followed by the same titers for hens and Quintana for galaxy dx and igenex, further confirming my case.

Wish I knew exactly how I got it...but many times with these stealth pathogens it's really hard to really trace where exactly began...one of the worst parts about it and why I feel it gets to the point where it's out of control before something is done about it. >< vicious organisms they are...
Posted 7/30/2018 12:42 AM (GMT -5)

xpeetzax said...
@Girlie, My latest LLMD told me to discontinue mino and start with clarithro (biaxin) because that is the protocol Dr. M, Dr. H, and other renown LLMD's use for bart. Also it's a little more gentler on the stomach than mino..which I have definitely noticed. Also... this may be a bit random..but I love the smell of the biaxin pills...gives a hint of vanilla...I miss ice cream =[.

I did know Dr M pairs Biaxin with Rifampin - and he often switches the Rifampin to Rifabutin.

I didn’t know that Dr H prefers Biaxin though.


Dr J seems to prefer minocycline - I may ask him about Biaxin when I see him in August - as I’ve been on mino for a long time.
My list of questions is growing so not sure I’ll get to that one in my 30-45 minute appt.
Posted 7/30/2018 2:34 PM (GMT -5)

Girlie said...


I did know Dr M pairs Biaxin with Rifampin - and he often switches the Rifampin to Rifabutin.

I didn’t know that Dr H prefers Biaxin though.


Dr J seems to prefer minocycline - I may ask him about Biaxin when I see him in August - as I’ve been on mino for a long time.
My list of questions is growing so not sure I’ll get to that one in my 30-45 minute appt.

Yes, I will be switching to Rifabutin later on my Dr told me. Yeah I think I heard Dr. H mention that somewhere in a recent speech he gave at a conference/convention of some sort but I could be wrong!
Posted 8/1/2018 8:23 PM (GMT -5)
Okay so I got back from my local LLMD here in SD and he disagrees with my LLMD up north in almost every area! Here are the points of difference and I would please like some help trying to decide which protocol to follow?

My local doctor:
-doesn't think I should be taking biaxin...he thinks mino+rif+bactrim combo works best vs bart and also covers for yersinia
-says he doesn't agree with the other's enzyme choices to break the biofilms (serropeptase, lumbrokinase)...he thinks bromelain works better.
-doesn't agree with my supportive thyroid or cortisol treatments...disagrees that saliva test is best for cortisol.
-he thinks benzodiazepines are dangerous and addictive
-he thinks rif should be taken twice daily 300mg (morning and evening) so it's constantly in your system whereas my LLMD up north says it works better in pulses (2x at one time during the day on empty stomach)
-recommends IV magnesium infusions for herx?? has anyone heard of this?

So let me know what you guys think as my local doctor told me I should probably stick to one protocol and wants to go more minimalistic as my LLMD up north has me on a lot of supportive medications that he thinks is unnecessary.

Thanks everyone.
Posted 8/2/2018 12:26 PM (GMT -5)
I am not surprised by this, each LLMD has their own distinct approach and opinions on treatment, drugs, supplements, dosages, treatment duration, etc.

i think its a more about deciding what or who you are more comfortable with. related to bartonella, i would try to follow one of the standard protocols, whether its rifabutin or rifampin combined with two others, or say bactrim. make sure biofilms are covered. also, some of these ohter supplements you may rotate in and out over time

i would agree benzos should be avoided. i was a long time user of xanax and it took me a year to get off of it.

i have also tried to get 'top LLMDs' opinions, no two are like. some are terrible, and others are supportive. it took me 3 different LLMD screenings to get a good a feeling about one.
Posted 8/2/2018 12:43 PM (GMT -5)

xpeetzax said...
Okay so I got back from my local LLMD here in SD and he disagrees with my LLMD up north in almost every area! Here are the points of difference and I would please like some help trying to decide which protocol to follow?

My local doctor:
-doesn't think I should be taking biaxin...he thinks mino+rif+bactrim combo works best vs bart and also covers for yersinia
-says he doesn't agree with the other's enzyme choices to break the biofilms (serropeptase, lumbrokinase)...he thinks bromelain works better.
-doesn't agree with my supportive thyroid or cortisol treatments...disagrees that saliva test is best for cortisol.
-he thinks benzodiazepines are dangerous and addictive
-he thinks rif should be taken twice daily 300mg (morning and evening) so it's constantly in your system whereas my LLMD up north says it works better in pulses (2x at one time during the day on empty stomach)
-recommends IV magnesium infusions for herx?? has anyone heard of this?

So let me know what you guys think as my local doctor told me I should probably stick to one protocol and wants to go more minimalistic as my LLMD up north has me on a lot of supportive medications that he thinks is unnecessary.

Thanks everyone.

No surprise.... Each LLMD thinks their protocol is the best...or they'd be changing it...so you need to decide which one you want to go with.
Re: thyroid/adrenal treatments - are you feeling better on them? (or haven't you started yet?)

I don't know which Doc you should go with.
My LLMD prescribes Rifampin twice daily (300 each) - that is Dr.J. (if you're wanting a vote...lol)
Dr. j also prescribes mino and bactrim with Rifampin or rifabutin.

Rifampin should be on an empty stomach...if you can ....I usually give it half hour (one full hour is ideal) - as I don't want any tummy issues...but I figure 1/2 hour gives it a start at least.
Posted 8/2/2018 1:00 PM (GMT -5)
I would def just try and choose one, otherwise it is too many chefs in the kitchen. Stick with one, see how it goes for a while, if you aren't making progress can always hit up the other one for a slightly different method.

Couple things I'd do, spend a bit of time and carefully research the treatment protocols/strategies they are proposing and see which approach makes more sense in your eyes. I'd also weigh how comfortable you feel with each doctor, if you get a sense that one or the other will be a better fit as a partner I'd weigh that as an important factor.

What do you think about the supportive therapies? do they seem helpful to you? often times smartly calibrated supplements can help patients tolerate treatments and also stabilize their body a bit more. It depends, if you are not too severely affected a stripped down approach can work, but for more involved cases I think you need to really work beyond just the killing pathogens approach and incorporate more wide-ranging approaches, including immune system boosting strategies and tactics to help improve adrenal function. I do have to say I like the 5 point plan, those strategies make a lot of sense to me given my own situation and experience with this illness.

Imo you won't really go wrong with either choice, and in the end you can always fall back on your 2nd option if your 1st choice isn't working out. This stuff can involve a lot of trial and error, hard to know beforehand what will or won't work.

Post Edited (sebreg) : 8/2/2018 12:04:56 PM (GMT-6)

Posted 8/2/2018 11:16 PM (GMT -5)

sebreg said...
I would def just try and choose one, otherwise it is too many chefs in the kitchen. Stick with one, see how it goes for a while, if you aren't making progress can always hit up the other one for a slightly different method.

Couple things I'd do, spend a bit of time and carefully research the treatment protocols/strategies they are proposing and see which approach makes more sense in your eyes. I'd also weigh how comfortable you feel with each doctor, if you get a sense that one or the other will be a better fit as a partner I'd weigh that as an important factor.

What do you think about the supportive therapies? do they seem helpful to you? often times smartly calibrated supplements can help patients tolerate treatments and also stabilize their body a bit more. It depends, if you are not too severely affected a stripped down approach can work, but for more involved cases I think you need to really work beyond just the killing pathogens approach and incorporate more wide-ranging approaches, including immune system boosting strategies and tactics to help improve adrenal function. I do have to say I like the 5 point plan, those strategies make a lot of sense to me given my own situation and experience with this illness.

Imo you won't really go wrong with either choice, and in the end you can always fall back on your 2nd option if your 1st choice isn't working out. This stuff can involve a lot of trial and error, hard to know beforehand what will or won't work.

Wow, thank you so much...this was so tremendously helpful.
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