I haven't been around much lately. This is a GOOD THING and it is because I have been feeling really good lately and out living my life.
I have been off abx for about 18 months and have been holding at around 95% of "normal." I only have a few mild symptoms that are really persistent.
Specifically: mild, occasional night sweats, mild twitching calves, and mild tinnitus. But aside from these I am "normal."
Anyway, I see a good LLMD in CT and have been on and off various herbs the past year. The sweats are a continued concern for me and we think it could be Brucella. So he prescribed by Byron White's A-Bio.
I started 1 drop / day, then went to 1 drop 2x/ day. Then I stopped for a few weeks (traveled and forgot to bring it.) But felt ok.
Last Sunday I started 2 drops 2x/day and then went to 3 drops on Monday.
Monday night, I felt spacey/detached. Tuesday the spaciness continued and I had jaw pain. Wednesday it continued.
I stopped the drops today, but feel no different. Still have that awful spacey, foggy, brain herx feeling. It is terrible.
I realize this is likely a flare from the A-Bio. I had a flare way back when from A-Bart that was similar. I'm just really scared that it hasn't subsided and that it won't go away. I've been doing really really well. Life has returned to normal. I can't go back to the way I was.
Hoping and praying this is just a bad brain herx and that all will be back to normal in a few days. But worry I've kicked the hornet's nest or perhaps am relapsing. It is scary. I've been through this many times before, but it seems worse this time...or perhaps I'm just "out of practice."
I know there is nothing you can do, but needed to talk with someone about it. It is scary. And I think it is also safe to say I still have "something" lurking. Sigh.
Be well.
Posted by Carol in PA (Member # 5338) on :
"mild twitching calves..."
Are you taking magnesium?
Posted by bcb1200 (Member # 25745) on :
no
Posted by dbpei (Member # 33574) on :
Sorry to hear about this, bcb. It must be very distressing after doing so well for a good period of time. Perhaps the stress of your vacation (even good stressors can do this) disrupted the good homeostasis you had going on in your body.
It must be so very distressing to still be feeling the same after stopping the drops. Have you talked to your LLMD about this? My hunch is that there were probably some buggers still hiding out in their favorite spots and you probably got them riled up.
Although I have not yet gotten to the good place you were in, from many posts I have read, that once you relapse like this, it is often short lived. Hopefully, you will get back to the good place you were at in a short amount of time. I wonder if adding one drop very slowly - like a week at a time - might be the way to go with this.
Good luck and please keep us posted.
Posted by Ellen101 (Member # 35432) on :
Please forgive me if you are not a female, but have you had your hormone levels checked?
The "remaining symptoms" could easily be due to other issues, not necessarily lyme as I have found out in my case.
The night sweats are controlled if I take my estrogen, the eye twitches disappeared once I switched my thyroid meds.
You may not be having a flare, but experiencing side effects..
Posted by bcb1200 (Member # 25745) on :
Ellen: Thanks...I'm a 40 year old man. So night sweats aren't normal.
DB.thanks for the encouragement. I've been dealing wtih this illness since 2010, but honestly have felt really good the past 2 years. I can handle flares...but a "brain herx" like this always freaks me out a bit as it was my worst symptom before diagnosis/treatment and one that I never want to return.
Feeling about the same today, but will give it a few more days. Have some air hunger, surprisinly. I do feel my Babs Duncani has been lurking (but in check) and then the drops, stress, or some other thing stirred the pot.
I've had brain flares like this before, but they only ever lasted 2-3 days. This one is going on 5.
Posted by Lymetoo (Member # 743) on :
"occasional night sweats" ... so is it worth the "treatment?" ...
I second the suggestion of magnesium. Drugs deplete our bodies of the magnesium we MUST HAVE. Get a good one, like mag glycinate.
I sure hope you can get back to 95% so you can continue to enjoy life!
Posted by GretaM (Member # 40917) on :
Agree with others.
I am neuro lyme, so can sympathize with the fear that brain issues bring.
Byron White herbs that I'vea tried A Bab A Bart A V A P
The A Bab I went to 15 drops twice a day no prob. No herx no anything.
A-V herxed like crazy. Flare encephalitis. Worked UP TO 2 drops a week. Could not more beyond that
A-Bart went slow. Got up to 10 drops twice daily. Didn't seem to do much for bart.
A-P very strong. Seems to be helping.
I found with a bart and a v that they just seemed to stir up problems. Didn't ever get to max doses so can't be sure they would have killed everything eventually.
Reduce your drops by half, and increase detox methods to see if you can't pull away from the neuro herx.
Take binders away from other meds and supplements.
Posted by Brussels (Member # 13480) on :
ABio has :
-cats claw (that alone can be tough) - garlic: also tough with many pathogens - origan: 'deadly' for some (herxes) - artemisia annua: may cause strong herxes if you got babesia - usnea barbata: I have that tincture, and just a drop of that thing is extremely powerful.
No wonder people herx with this mixture. I would just go slow, load me with binders, and really, slow, slow, if ever taking this mix.
I would rather take plants separate, much safer. much milder...
Posted by hermit (Member # 44427) on :
Not being able to think on the level I'm used to is very depressing. I hope your symptom fades.
Posted by Ellen101 (Member # 35432) on :
At 95% of normal not sure I would mess with things. After all most days a lot of people don't feel 100% even those without lyme.
Posted by Brussels (Member # 13480) on :
I took cats claw for about 2 years, and always herxed from it, non-stop. I never reached anything as what Buhner was proposing, but always improved. I had to watch out the amount, very closely.
Frozen garlic from dr. K: it can cause horrible herxes alone. It is extremely powerful against so many pathogens (viruses, bacteria, even parasites, and candida).
Origan, I can't even smell the oil. It burns even on the skin. I was never brave enough to ingest it.
Artemisia: some people feel nothing. But if you got babesia, you will almost sure react to it in a way or another. I did my own decoctions during the time I had babesia. It helped me a lot, more than artemisinin. Milder, but better, in my opinion. But artemisa annua means herxes!
Usnea barbata: I use it ALONE, very rarely, it is EXTREMELY powerful against many pathogens, including candida. Herxes can be horrible. I use Sanum tincture.
So this Byron White ABIo mix looks good, but it is a powerful mix. Possible too powerful.
too powerful is not always good in lyme. Too powerful simply means too much herxing in the short term. It makes your life a hell.
In the middle term it means: your body is too toxic to improve, so you go backwards, not forwards.
I would just try one by one, and control the amount. No energy = no healing.
Posted by Judie (Member # 38323) on :
I'm sorry you're going through this.
I stay away from Byron White. Too many things and there's and no way to know which one is causing problems.
Astragalus is in a lot of them and that can cause an auto-immune response in some people.
Also, have you had any toxic exposures??? (New paint, new furniture, new interior from a rental car, etc...) That can also cause those spaced out symptoms.
My first experience with symptoms like you described was from a toxic exposure, not Lyme.
Posted by bcb1200 (Member # 25745) on :
Thanks guys. I stopped drops Thursday and today I feel back to normal for the most part. It was scary.
I assume it was Babesia that was flaring as I had air hunger, and I had similar flares on A-Bart and Hulda Clark. They all have the same ingredients.
Posted by CD57 (Member # 11749) on :
Is A BIO supposed to target brucella, or something else?
Interesting experience Greta about some stirring the pot and others helping?
Posted by beths (Member # 18864) on :
I think the key, on herbs is to go slow. I've been off abx for 8 months and on herbs. I too feel 90% most days.
I know I have a few lingering "bugs" so I stay on herbs to zap them gently, and continue to take binders to detox. If I take too much of my herbs I herx- so at this point low and slow seems to work well for me. I don't think quitting the herbs all together is a good idea, because then the bugs will just replicate, to the point they can cause symptoms again
But that's just my thoughts
Posted by CherylSue (Member # 13077) on :
Thanks Beths for updating us on your progress. I am happy for you. I hope to get where you are soon. In September, I'll be weaning off abx and continuing the BWF's.
Posted by bcb1200 (Member # 25745) on :
Thought I would give an update.
I restarted A-Bio a few weeks ago. Have gone very slow and am now back up to 3 drops 2x/day. No brain herx and sweats / twitching are better.
The bad news is, my lower back is killing me. I haven't done anything to injure it, although it is a weaker point of mine in general.
Guess what organism can cause lower back pain? Brucella.
A-Bio targets gram negative bacteria and is very good for Brucella.
LLMD thinks we are onto something...
Posted by CD57 (Member # 11749) on :
Here's what I don't get -- brucella and bartonella are so similar that the same abx are used to treat them. They are both gram negative intracellular infections. So how is it possible to tell them apart?
Posted by GretaM (Member # 40917) on :
CD-i wonder this myself sometimes because of the nature of the bacteria.
Thanks for the update bcb.
I think brucella may be a coinfection a lot more folks have
Posted by TNT (Member # 42349) on :
Just thought I would give a short reminder that brucella can cause "malarial-like symptoms" (which would include trouble breathing and air hunger), lower back pain, etc...
What would a brucella herx look like???... I'm not completely sure... It's just a thought in relation to your A-Bio experience.
There are some very good links in the "brucellosis" thread.
Posted by TNT (Member # 42349) on :
Trying to find where A-Bio is listed for Brucella or gram-negative infections.
Is there some info someplace, or is this by word of mouth through practitioners? The website doesn't list specific infections.