Posted 3/6/2018 12:43 PM (GMT -6)
goshawk said...
Curious, you mentioned twitching.....but you say negative for Bartonella....testing can be unreliable

My twitching is from Bartonella

Might try a few herbals for Bart and see what happens


Honestly, Bartonella is what I thought I might have rather than Lyme. But I did all possible tests available for it with Arminlabs and they all came back negative.

Arminlabs said...
Bartonella antibodies
Bartonella-quintana-IgG-IFT < 1:64 Titer < 1:64
Bartonella-quintana-IgM-IFT < 1:20 Titer < 1:20
Bartonella-henselae-IgG-IFT < 1:64 Titer < 1:64
Bartonella-henselae-IgM-IFT < 1:20 Titer < 1:20

Serological no evidence for an infection with Bartonella henselae or Bartonella quintana.

Bartonella DNS
Bartonella henselae/quintana-DNS (PCR) negative negative

No actual evidence for specific Bartonella henselae/quintana-DNS in the blood.
Posted 3/6/2018 12:45 PM (GMT -6)
Girlie said...
goshawk said...
Curious, you mentioned twitching.....but you say negative for Bartonella....testing can be unreliable

My twitching is from Bartonella

Might try a few herbals for Bart and see what happens


He is taking antibiotics (Rifampin) for bart now though.

I guess it wouldn't hurt if he added in a couple of herbs - maybe the JK and Houttuynia.

Oh - I just saw your dosage of Rifampin, Sean...300 once daily of Rifampin is half the dose.
...or are you taking Rifabutin?


The brand name is Rifadin. Rifampicin 300mg. That's the dose I've been on for the past 9 months.
Posted 3/6/2018 1:27 PM (GMT -6)
SeanIRL said...
Girlie said...
goshawk said...
Curious, you mentioned twitching.....but you say negative for Bartonella....testing can be unreliable

My twitching is from Bartonella

Might try a few herbals for Bart and see what happens


He is taking antibiotics (Rifampin) for bart now though.

I guess it wouldn't hurt if he added in a couple of herbs - maybe the JK and Houttuynia.

Oh - I just saw your dosage of Rifampin, Sean...300 once daily of Rifampin is half the dose.
...or are you taking Rifabutin?


The brand name is Rifadin. Rifampicin 300mg. That's the dose I've been on for the past 9 months.


Yes, but it's half the dose that's required to treat bartonella.

In fact some LLMD's go further than 600 mg per day.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
Posted 3/6/2018 2:12 PM (GMT -6)
Twitching can be from low magnesium or b12. Have you been supplementing?
Posted 3/6/2018 2:55 PM (GMT -6)
Well, this is definitely mysterious!!

I've had ME/CFS since 2005, which was triggered after some dental work. (A mouthful of fillings, which I had safely removed a few years ago and chelated for 3 years to make sure).

So you did not have CFS until you had mercury amalgams removed.

Were you having other problems that led you to have amalgams removed in the first place?

You chelated for 3 years. What did use for chelation? How did you feel when doing chelation? How did you feel after you stopped chelation?

Then a few years back I was bit by my cousin's dog, and that night I noticed my leg was twitching which gradually over time migrated to random parts of my body. At one point it was really bad, but honestly right now - it's nowhere near as bad as it was and is really triggered mostly by dairy.

The twitching started with the dog bite. Was the bite a puncture wound? Twitching is a neurological symptom. It could be caused by any number of things not just Lyme or bartonella. Theoretically, the dog bite could have caused damage to a nerve. However, you said the twitching later migrated to various areas of the body and you did have some eyelid twitching prior to the dog bite. Now you believe the twitching is mostly triggered by dairy. Not sure what to think of the dairy connection.

The twitching was there before the dog bite but was mild. After the dog bite it was noticeable and you became much more aware of it.

With longterm Lyme and coinfections, symptoms can start out mild and be easily dismissed. Later, they can occur more frequently or change and evolve along with new symptoms.

Definitely positive for Lyme via tests. It is possible your immune system has largely kept the Lyme in check. Bartonella tests are harder to get a positive on from my understanding, and there are numerous other species besides the 2 they test for that can infect humans.

Still, none of this explains why you have had NO reactions positive or negative to multiple antibiotics and herbs.

There are people who were exposed to Lyme in the past and either were treated or their immune systems took care of it and yet they are unable to clear the toxins from their bodies. The toxins remain and trigger ongoing chronic inflammation that Dr. Shoemaker termed Chronic Inflammatory Response Syndrome (CIRS). That is one possibilty here. You can read about Shoemaker's work at www.survivingmold.com. There are many people with ME/CFS who are sick due to biotoxins and a genetically induced inability to clear toxins. Many of them are on the Phoenix Rising Forum. Many of them were sickened due to mold exposure and other organisms that produce biotoxins.
Posted 3/7/2018 2:17 PM (GMT -6)
k07 said...
Twitching can be from low magnesium or b12. Have you been supplementing?


My magnesium and B12 levels are fine. I already tried supplementing with magnesium malate, epsom salt baths and an array of forms of B12.
Posted 3/7/2018 2:26 PM (GMT -6)
WalkingbyFaith said...
Well, this is definitely mysterious!!

I've had ME/CFS since 2005, which was triggered after some dental work. (A mouthful of fillings, which I had safely removed a few years ago and chelated for 3 years to make sure).

So you did not have CFS until you had mercury amalgams removed.

Were you having other problems that led you to have amalgams removed in the first place?

You chelated for 3 years. What did use for chelation? How did you feel when doing chelation? How did you feel after you stopped chelation?


No, I developed CFS after getting amalgams. Have read lots of anecdotes of people developing health issues from amalgam fillings from mercury toxicity. After a few years I had my fillings replaced safely and began chelation a few months later.

I chelated with the cutler protocol (ALA & DMSA every 3 hours, 3 days a week). I did this for 3 years without improvement.

WalkingbyFaith said...

Then a few years back I was bit by my cousin's dog, and that night I noticed my leg was twitching which gradually over time migrated to random parts of my body. At one point it was really bad, but honestly right now - it's nowhere near as bad as it was and is really triggered mostly by dairy.

The twitching started with the dog bite. Was the bite a puncture wound? Twitching is a neurological symptom. It could be caused by any number of things not just Lyme or bartonella. Theoretically, the dog bite could have caused damage to a nerve. However, you said the twitching later migrated to various areas of the body and you did have some eyelid twitching prior to the dog bite. Now you believe the twitching is mostly triggered by dairy. Not sure what to think of the dairy connection.

The twitching was there before the dog bite but was mild. After the dog bite it was noticeable and you became much more aware of it.



I had eyelid twitching every now and again, but not anywhere else in my body. The body twitches seemed different. They were pretty bad but the past year or so, they have subsided a bit. If I ingest a lot dairy they get worse, and I think stress also plays a role in their frequency.

WalkingbyFaith said...

Still, none of this explains why you have had NO reactions positive or negative to multiple antibiotics and herbs.


Honestly, I'd have more of a reaction from a cup of tea than these antibiotics. I was expecting me to react poorly to at least one of them because I was taking so many, but I've felt just fine on them.
Posted 3/7/2018 2:28 PM (GMT -6)
Try doubling your Rifampin dose...it's not high enough to treat bartonella effectively.


also, did you know that taking Rifampin with malarone could reduce the effectiveness of the atovaquone in the malarone? It's already a lower dose compared to Mepron.

Another suggestion is to try Mepron instead of malarone and maybe discuss with your dr. removing the Rifampin for awhile while you take Mepron...so that you can give it a good 'shot' without the potency being reduced.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 3/7/2018 12:33:02 PM (GMT-7)

Posted 3/7/2018 6:57 PM (GMT -6)
Girlie said...
Try doubling your Rifampin dose...it's not high enough to treat bartonella effectively.


also, did you know that taking Rifampin with malarone could reduce the effectiveness of the atovaquone in the malarone? It's already a lower dose compared to Mepron.

Another suggestion is to try Mepron instead of malarone and maybe discuss with your dr. removing the Rifampin for awhile while you take Mepron...so that you can give it a good 'shot' without the potency being reduced.


I can't because he has given me my final 3 month's of prescription and if there's no changes after that then he's taking me off the abx sad
Posted 3/7/2018 7:19 PM (GMT -6)
I've e-mailed him and asked him if he would double my rifampin dose, and also add doxycycline on top of the amoxicillin. If I'm going to be finished with my abx in 3 months, I'd like to just throw everything at it.

I've also ordered some ivermectin, which I've seen people report it curing twitching. It's worth a shot.
Lyme diagnosis summer 2017:
Medication: malarone, rifampin, azithromycin, cefuroxime, lymecycline (cycled out after 6 months)
Herbs: nattokinase, artemisimin, cat's claw, whole leaf stevia extract, teasel root extract, sarsaparilla, japanese knotweed.

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