Please help

Use binders to help stop the herxing now that you have stopped the Doxy - just watch out for constipation to start. That works against us being able to detox!

Also, have you been checked for MTHFR gene mutations?
What about Mast cell issues?
Have you just tried moving slower with upping the doses?
Have you tried any alternative/holistic approaches to treating these infections?

Tonya - sorry you're still dealing with all this.

When you were on the Malarone - did you get improvement? And what antibiotic did you take with it?


Maybe instead of Rifampin...you should start with Bactrim...it does have some activity against Bart...but it may be easier to tolerate than the rifampin.
Then after awhile you could do the Rifampin.

Thanks Girlie and bluelyme. I so long not to have a headache!! I can't really say any treatment made a big difference. Definitely noticed a difference when I stopped gluten, years ago when symptoms started. I also gave up eggs and that seemed to help my stomach issues. But even before treatment I would have these stretches where I felt ok, not great but not bad either. Then I'd get hit again, so constantly up and down, but not down this long. When I started treatment it was pretty much the same, other then herxing. I think I did ok on malarone, I started with an 1/8 of a pill, then a 1/4 and so on, so no big herxing. I was already in some sort of flare before I started the 2 days i lasted on Rifampin. But that herx was the worst I've ever had! I can't tell now if I'm back to the flare or if this could still be from the Rifampin...I just don't know, just wish things would mellow out!! I ordered Buhner's book on Amazon, part of me thinks I will stick to herbal treatment for awhile, but I'm not even sure at what point I should start it, since I don't know if I can handle it. Would I herx from houttynia? If this is Bart then I can say with certainty that I dislike Bart the most!!!

I would wait a bit before starting a herbal treatment - see what your baseline is.


Yes, houtty can cause a herx - Japanese knotweed is also part of the bart protocol - maybe start with that?

tonyaraven said...
Is japanese knotweed a little more gentle? Will it cause a herx too? When will my baseline come back? I guess that's a pretty hard question to answer!!

I think most people find JK more tolerable than Houtty.

It could cause a herx - but you can start very low and raise slowly.
(I mean like a couple drops )

Re - baseline back - mine evolved - I never went back to baseline - I had symptoms subside and some worsen, as well as new ones appear.

I assume when you say BAR-1 you're referring to Beyond Balance MC-BAR-1? I take BAR-1 and my LLNP has me taking TOX-EASE-GL with it. I take 2 more drops a day of the tox-ease than the bar. I've been taking it since July and have taken it up very slowly. I'm now at 12 bar, 14 tox. BAR-2 is the one that contains Houtt. My LLNP says that I don't get to graduate to that until I'm consistently 95%. I'm close, but I still have a week here and there when something flares. The only other herb I'm doing is Samento. I have not done any abx. I have done quite a bit of IV ozone, which really helped knock things back. As far as the headaches, NIR sauna knocks those out for me. It doesn't get rid of all of the head pressure, but it does stop my headaches. I don't go for the 100 degree kill temps. Mine gets to the high 80s/low 90s, which makes me sweat plenty and it really relaxes me.

I have herxed with the bar-1. It doesn't tend to last a long time for me, but I also follow my naturopath's instructions to back it off a drop if I herx. The herxes I've had haven't been bad; mainly head pressure flares for a few hours. And I haven't tried to do the increase a drop a day until I herx. I increase a drop then stay at that new amount for at least a week before trying another increase.

My symptoms: head pressure, neck, hip, jaw and lower back pain, GI issues (a lot of acid reflux which I never had before), vision (floaters, blurry, I see light "trails" coming off of objects, light sensitivity, a couple of times double vision, snow in low light conditions), eyes stinging, eyelid swelling, ear pain, sinus pressure (glasses were really uncomfortable to wear for awhile because they seemed to amplify that pressure), central vertigo (I felt like a listing ship), nightmares, morning anxiety, facial twitching (eyelids, lips, cheeks), tooth nerve pain, fasciculations in my legs, roving itching rash, sound sensitivity, some headaches (not often), muscle weakness, sore throats (could be EBV related), hormonal problems (I have 0 testosterone and my periods were all over the place), memory issues, tinnitus, peripheral autonomic neuropathy (which explains some of the above symptoms)...those are the big ones.

Most of these are gone for me. Some of the vision problems remain and the head pressure, especially in my face and at the base of my skull, continue to make an almost daily appearance. But it is nothing like it was. I rarely feel like I'm going to fall over at any moment. My energy has come back. I can wear a hat without feeling like my head will implode. I sleep...sweet, lovely sleep.

I can't say improvement is just from herbs. Diet and probiotics really helped the GI issues. I started regular sauna use and IV ozone about a month after starting the herbs (herbs July, the others August). I'm on all of the typical supplements and vitamins. Acupuncture (which I did not believe in when I started all of this) helped with the neuro symptoms/head pressure. Daily walks and stretching have been helpful. I can feel a difference if I skip that for a couple of days. I do self lymphatic drainage massages on my head/neck at least once a week. I take LDN (this was a somewhat late add, so it wasn't the smoking gun for me getting to this stage of 90-95%). And I take nasal glutathione. It helps a little with the pressure.

I know of a couple people who treated with only a macrolide and a tetracycline and got well but in both cases they were not ill for years - not sure if that’s why? (They had symptoms for 4-6 months)

I’ve also seen Bactrim being used successfully.

But from what I’ve read - Rifampin/Rifabutin is usually needed.
Most good, experienced llmd’s prescribe it for Bart.