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4 months of Abx, what next?

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Posted 3/13/2018 1:48 AM (GMT 0)
Hi People,

Looking for some advice. I tested positive for lyme and bart, I don't have babs symptoms. I tested clean on a heavy metal test. Although, I have not performed a swipe test I am not suspecting mold, as I live in a fairly dry climate without visible sign of mold. I have been in Lyme/Bart treatment with a LLMD for about 2 years with no avail. I began with changing to a mostly paleo diet, no alcohol and handfuls of supplements to boost the immune system and reduce inflammation. Then I began the Buhner herb protocols for about 17 months, my pain symptoms actually got worse during this period and I had a mild but consistent breakout of acne. I stayed with the supplements and Japanese Knotweed and added on abx about 5 month ago;
Doxy 200mg bid
Plaquenil 200mg bid
Rifampin 300mg bid
Tindamax 500mg 3x daily (pulsed on sat/sun)
Acne got worse and pain symptoms plateaued, maybe a slight improvement but not much for a 5 month period on abx.

I'm not sure what to try next, Dr. is suggesting I do the Dynamic Neural Retraining System and go back to herbs to avoid neuropathy damage from Tindamax. I have an allergy to Sulfa drugs so they are not an option for me.

I guess when this journey started I thought I would make some improvements, unfortunately I have gotten worse in the last 3 year despite my treatments.

What am I missing?
Posted 3/13/2018 2:20 AM (GMT 0)
So what are you referring to that you can’t take because of a Sulpha allergy?

I know you can’t take Bactrim and someone mentioned yesterday Dapsone is another one.


I’m thinking you might want to do some Babesia treatment
Posted 3/13/2018 3:19 AM (GMT 0)
Those are the 2 that my Dr. mentioned, Bactrim and Dapsone.

Somebody else mentioned Babesia, I don't think of my symptoms as babs, but maybe I should try it. I did have a stint of prolific night sweats about 6 years ago, but have since subsided.
Posted 3/13/2018 3:46 AM (GMT 0)
Is Doxy 200mg a high enough dose? I thought you needed 400mg.

I wonder if perhaps you should consider another LLMD? Sometimes if we don't make progress with a health professional and we have given it our best and enough time - it's time to find someone else.

I once had an excellent therapist who I made no progress with. I finally realized that her gift was not for me. I subsequently found another therapist who I progressed in leaps and bounds with.
Posted 3/13/2018 3:52 AM (GMT 0)
Your protocol is almost identical to what Horowitz writes in his book.

The problem is that it should only be during Month 1.

Here let me show you from the book:

MONTH ONE: Plaquenil 200 mg, one PO BID; doxycycline 100 mg, two PO BID (with meals); nystatin tablets 500,000 units, two PO BID, with pulse Flagyl or Tindamax three days a week, based on body weight

So that was good to do by your LLMD However! Horowitz then says to switch it up in Month 2:

MONTH TWO: Even if a patient has adequately responded to doxycycline with Plaquenil, with or without pulse Flagyl or Tindamax, combined with biofilm busters like Stevia/Serrapeptase/monolaurin for the treatment of acute Lyme disease, then after one month we will often rotate to a cell-wall, cystic, and intracellular protocol with biofilm busters for an additional month (unless there was a significant improvement in the first month without side effects). This protocol would include a combination of:

cell-wall drugs: cephalosporins such as Omnicef, Ceftin, or penicillins such as amoxicillin;

cystic drugs: Plaquenil and/or grapefruit seed extract (GSE), occasionally combined with Flagyl or Tindamax;

intracellular drugs: Zithromax or Biaxin, and occasionally Bactrim (sulfamethoxazole/trimethoprim, a persister drug), rifampin, and/or tetracyclines like doxycycline or minocycline.

nystatin: to prevent yeast infections associated with antibiotics

biofilm busters: Stevia plus Serrapeptase, and/or monolaurin.

I left out some text as to not copy the entire chapter, but you should consider buying the book, it's helpful.
Posted 3/13/2018 4:07 AM (GMT 0)

Glascis said...
Is Doxy 200mg a high enough dose? I thought you needed 400mg.

I wonder if perhaps you should consider another LLMD? Sometimes if we don't make progress with a health professional and we have given it our best and enough time - it's time to find someone else.

I once had an excellent therapist who I made no progress with. I finally realized that her gift was not for me. I subsequently found another therapist who I progressed in leaps and bounds with.

He's taking 200 mg twice daily - the usual dose for doxy.
Posted 3/13/2018 4:12 AM (GMT 0)

LymeSick 🌟 said...
Your protocol is almost identical to what Horowitz writes in his book.

The problem is that it should only be during Month 1.

Here let me show you from the book:

MONTH ONE: Plaquenil 200 mg, one PO BID; doxycycline 100 mg, two PO BID (with meals); nystatin tablets 500,000 units, two PO BID, with pulse Flagyl or Tindamax three days a week, based on body weight

So that was good to do by your LLMD However! Horowitz then says to switch it up in Month 2:


He's also doing Rifampin.
Posted 3/13/2018 4:20 AM (GMT 0)

NorCal said...
Those are the 2 that my Dr. mentioned, Bactrim and Dapsone.

Somebody else mentioned Babesia, I don't think of my symptoms as babs, but maybe I should try it. I did have a stint of prolific night sweats about 6 years ago, but have since subsided.

You could also consider changing the Rifampin for Rifabutin.


My LLND didn’t treat me for Babesia either - except for a short stint of Artesunate.

But I did end up treating on my own and herxed in the Babs treatment with some small improvements after (sweating and tinnitus) The tinnitus had already improved some on bart Treatment so not sure if it may have resolved without Babs treatment tho.
Also Mepron increased my head pressure greatly and then afterwards it was much better.

Oh.. And I’ve noticed my memory has improved (finally) since the Babs treatment.
Posted 3/13/2018 4:50 AM (GMT 0)
These are all great suggestions. I will look into switching up the abx a bit; Rifabutin, cephalosporins and Zithromax or Biaxin.

I know it is a personal decision, but I guess part of the overall question is how long do you stick with abx before the risk is no longer worth the benefit
Posted 3/13/2018 7:17 AM (GMT 0)
Bvt and zhang with rife has me in remission. ...iv abx got me places quik
Posted 3/13/2018 12:23 PM (GMT 0)
you need to try and go after babesia. the fact you haven't even tried after all this time is an indictment of your LLMD. doesn't matter if you think you don't have symptoms and your bloodwork shows up negative, these are stealth pathogens and can hide from detection.

have your LLMD try a few months of mepron with zithromax and see if you respond.
Posted 3/13/2018 1:00 PM (GMT 0)
Babesia will definitely stop you from healing. I did not have any Babesia symptoms initially, plus I had a negative test for it as well. It wasn't until I took Mepron that my spleen enlarged, got air hunger, and received a positive igg for babs. Definitely treat for babs even if you don't think you have it. I treated for 4 months and got worse. Now that I am treating babs, i have stablized and will hopefully turn a corner for the better soon.
Posted 3/13/2018 2:18 PM (GMT 0)
Hearing your comments are making me frustrated with my LLMD. I will push the Babesia approach with him , like i said I haven't had current babesia symptoms, but about 6 years ago I experienced prolific drenching night sweats which must have been Babesia.

My LLMD mentioned the idea of IV ABX , but quickly talked me out of it for financial and dangerous health reasons. Personally , I haven't wanted to go there, who does, but maybe it is a necessary step. I just hate the idea of poisoning my body without the confidence of efficacy, especially when my LLMD doesn't really want to go there. He wants me to focus on retraining my brain with "dynamic Neural Retraining System", I'm sure it would help , but I can't help to think it's a drain of my limited time and not the main driver of symptoms.

Maybe it is time to switch my LLMD , the thought of starting all over with someone new is equally frustrating.

I am extremely grateful to this forum for support and guidance. THANK YOU!

Post Edited (NorCal) : 3/13/2018 9:26:06 AM (GMT-6)

Posted 3/13/2018 5:39 PM (GMT 0)
"Maybe it is time to switch my LLMD , the thought of starting all over with someone new is equally frustrating."

Sounds like a good idea. That was my first thought when I read your post. From what you said, it sounds like your doc is kind of giving up. IMO, brain neural retraining is just a form of psychotherapy - like "I don't know what to do with you anymore. See if you can learn how to imagine your symptoms away."

If you're getting worse instead of better, there has to be a reason. I'd look for somebody who is very experienced with Lyme AND coinfections AND other factors that can impede healing.

Post note: You did mention you skipped the mold testing. Two things you should be aware of:

1. Mold exists in dry climates too. An HVAC duct system is often moldy. Slow, hidden leaks inside walls, under floors, and in attics will cause mold.
2. If you have had mold exposure any time in the past, especially if you have a susceptible genetic predisposition, you may not be able to clear mold toxins from your body and continue to suffer ongoing chronic systemic inflammation. This can be caused by other biotoxins, too, not just mold.

Post Edited (WalkingbyFaith) : 3/13/2018 11:45:35 AM (GMT-6)

Posted 3/13/2018 6:37 PM (GMT 0)

Hoagie said...
Babesia will definitely stop you from healing. I did not have any Babesia symptoms initially, plus I had a negative test for it as well. It wasn't until I took Mepron that my spleen enlarged, got air hunger, and received a positive igg for babs. Definitely treat for babs even if you don't think you have it. I treated for 4 months and got worse. Now that I am treating babs, i have stablized and will hopefully turn a corner for the better soon.

Yay, Hoagie! I know this isn't 'your' thread...but couldn't resist commenting.

I hope you have turned the corner, as well.
Posted 3/13/2018 6:40 PM (GMT 0)

NorCal said...
Hearing your comments are making me frustrated with my LLMD. I will push the Babesia approach with him , like i said I haven't had current babesia symptoms, but about 6 years ago I experienced prolific drenching night sweats which must have been Babesia.

My LLMD mentioned the idea of IV ABX , but quickly talked me out of it for financial and dangerous health reasons. Personally , I haven't wanted to go there, who does, but maybe it is a necessary step. I just hate the idea of poisoning my body without the confidence of efficacy, especially when my LLMD doesn't really want to go there. He wants me to focus on retraining my brain with "dynamic Neural Retraining System", I'm sure it would help , but I can't help to think it's a drain of my limited time and not the main driver of symptoms.

Maybe it is time to switch my LLMD , the thought of starting all over with someone new is equally frustrating.

I am extremely grateful to this forum for support and guidance. THANK YOU!

You may need to emphasize the babs symptoms. greatly. a lot.
That's what I did to get my bart treatment. When I had my phone appt...and he asked about symptoms (after about a year of treatment), I mentioned my sore feet, my rib pain, and my swollen lymph node.
It wasn't a lie...I just knew that if I didn't highlight those...I may be on lyme only antibiotics for another 2-3 months.

I tried again for Babs...but he just skirted the issue...after giving me an herbal treatment - with ingredients that weren't known to treat Babesia plus the Artesunate. It stirred things up...but wasn't enough. I have since switched LL Dr.'s.
It sounds like I am bashing him - I want to mention that he has treated many people who are now healed...but he didn't seem to be able to get me to the finish line...I also think he has gotten too busy lately and the 15 minute appts don't cut it.

So you can try to get Babs treatment...but if he won't prescribe...then you really should consider moving on to another LLMD.
Posted 3/13/2018 6:45 PM (GMT 0)
I think the retraining of the brain with the "Dynamic Neural Retraining System" is good - but it won't get rid of existing untreated infection.
I have been tempted to do it.(DNRS)

My LLND recommended it as well when I was wanting the babs treatment. lol...maybe they know each other..
Posted 3/13/2018 6:58 PM (GMT 0)

Girlie said...

Hoagie said...
Babesia will definitely stop you from healing. I did not have any Babesia symptoms initially, plus I had a negative test for it as well. It wasn't until I took Mepron that my spleen enlarged, got air hunger, and received a positive igg for babs. Definitely treat for babs even if you don't think you have it. I treated for 4 months and got worse. Now that I am treating babs, i have stablized and will hopefully turn a corner for the better soon.

Yay, Hoagie! I know this isn't 'your' thread...but couldn't resist commenting.

I hope you have turned the corner, as well.

Thank you Girlie!

Let's hope this works. I wish Dr J would give all these other LLMDs annual training. At the time I went to his clinic, my spleen was not enlarged and I had no Babesia symptoms. But, thank God he put me on the protocol anyway. Only after a week of treatment I started having indications of a Babesia infection and a positive test. Crazy!
Posted 3/13/2018 9:14 PM (GMT 0)
Dr. J knows what he's doing. It seems at times he rolls out the same old protocol for years now and other LLMD's should be able to copy his approach but they can't and he continues to get results.

All of these tick borne pathogens are stealth so you never know what you really have. What we do know is the same meds kill them so that's comforting.

NorCal Dr. J is my 3rd LLMD after going to 2 others for 1 year each. My first LLMD was a big shot and wel known in lyme circles but there were things he did I didn't like and I didn't get better under him.

I'm not 100% but much better since seeing Dr. J for the past year. It's usually a long journey with this stuff but you should improve if under the care of an LLMD that's well seasoned.
Posted 3/13/2018 11:33 PM (GMT 0)

Rikky1 said...
Dr. J knows what he's doing. It seems at times he rolls out the same old protocol for years now and other LLMD's should be able to copy his approach but they can't and he continues to get results.

All of these tick borne pathogens are stealth so you never know what you really have. What we do know is the same meds kill them so that's comforting.

NorCal Dr. J is my 3rd LLMD after going to 2 others for 1 year each. My first LLMD was a big shot and wel known in lyme circles but there were things he did I didn't like and I didn't get better under him.

I'm not 100% but much better since seeing Dr. J for the past year. It's usually a long journey with this stuff but you should improve if under the care of an LLMD that's well seasoned.

Do you have any advice on choosing an LLMD? I thought I was in good hands.
I hear Dr. J mentioned a lot, but I don't know who that is. I know we are not mentioning Dr. names
Posted 3/14/2018 12:32 AM (GMT 0)
Dr. J is in Washington DC he has a 'clinic' there so you should be able to easily find him via an internet search.
Posted 3/14/2018 1:30 AM (GMT 0)

NorCal said...

Rikky1 said...
Dr. J knows what he's doing. It seems at times he rolls out the same old protocol for years now and other LLMD's should be able to copy his approach but they can't and he continues to get results.

All of these tick borne pathogens are stealth so you never know what you really have. What we do know is the same meds kill them so that's comforting.

NorCal Dr. J is my 3rd LLMD after going to 2 others for 1 year each. My first LLMD was a big shot and wel known in lyme circles but there were things he did I didn't like and I didn't get better under him.

I'm not 100% but much better since seeing Dr. J for the past year. It's usually a long journey with this stuff but you should improve if under the care of an LLMD that's well seasoned.

Do you have any advice on choosing an LLMD? I thought I was in good hands.
I hear Dr. J mentioned a lot, but I don't know who that is. I know we are not mentioning Dr. names

Email me if you want - I can give you more info
Posted 3/14/2018 1:35 AM (GMT 0)
Ouch! that's pretty far. Any recommendations for Northern CA (San Francisco)? Clearly I don't know how to vet a LLMD
Posted 3/14/2018 1:48 AM (GMT 0)
NorCal-I'm in San Jose. You can email me for info on Bay Area LLMD's and LLND's. We have quite a few that are very good.
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