Today is my one-year anniversary

Exactly one year ago today, I woke up with an attached tick in my underarm while staying in the lower Hudson Valley in NY (aka Lyme Central). Through a combination of ignorance and denial, I didn't seek treatment until my health had been in steady decline for months.

I suppose I can't complain too much, as I've been able to stay more or less functional and keep working through it all (although there were plenty of times I questioned my sanity and thought I wouldn't make it). Thanks to two courses of amoxicillin and Buhner's herbs, I think there is a decent chance I've gotten the actual Lyme spirochetes out of the way, or least deep in remission. But the Bartonella/Babesia/unknown mystery illness lingers on (despite cycling through Buhner's herbs for coinfections).

I had always fantasized that once I hit this anniversary I would be better, but alas that is not the case. And I'm worried that my current treatment plan could be causing kidney damage and may need to stop.

Some general thoughts/questions...
How do you all deal with these "milestones" of your illness/treatment and keep hope alive?
Has anyone ever taken a break from all treatment for Bartonella/Babesia, and if so, what happened?

(Bonus points: could anyone tell me what my remaining coinfection(s) are likely to be? My strongest remaining symptoms are feeling like I have an "infected layer" in my face/cheeks/near the base of my ears as well as my chest that has pressure/numbness sensations, and occasionally burns. When it flares up it is accompanied by a kind of static sound in my ears. I also have muscle twitching in my face and randomly around my limbs/body. One LLMD diagnosed Bartonella off of a barely positive antibody titer (literally at the cutoff value for negative), but she was also kind of shady and I got a bad vibe from her. Another LLMD said she thought my symptoms sounded more like Babesia. Has anyone had a similar cluster of symptoms, and successfully treated it?)

Thanks for reading.

1yrinVA said...
Exactly one year ago today, I woke up with an attached tick in my underarm while staying in the lower Hudson Valley in NY (aka Lyme Central). Through a combination of ignorance and denial, I didn't seek treatment until my health had been in steady decline for months.

I suppose I can't complain too much, as I've been able to stay more or less functional and keep working through it all (although there were plenty of times I questioned my sanity and thought I wouldn't make it). Thanks to two courses of amoxicillin and Buhner's herbs, I think there is a decent chance I've gotten the actual Lyme spirochetes out of the way, or least deep in remission. But the Bartonella/Babesia/unknown mystery illness lingers on (despite cycling through Buhner's herbs for coinfections).

I had always fantasized that once I hit this anniversary I would be better, but alas that is not the case. And I'm worried that my current treatment plan could be causing kidney damage and may need to stop.

Some general thoughts/questions...
How do you all deal with these "milestones" of your illness/treatment and keep hope alive?
Has anyone ever taken a break from all treatment for Bartonella/Babesia, and if so, what happened?

(Bonus points: could anyone tell me what my remaining coinfection(s) are likely to be? My strongest remaining symptoms are feeling like I have an "infected layer" in my face/cheeks/near the base of my ears as well as my chest that has pressure/numbness sensations, and occasionally burns. When it flares up it is accompanied by a kind of static sound in my ears. I also have muscle twitching in my face and randomly around my limbs/body. One LLMD diagnosed Bartonella off of a barely positive antibody titer (literally at the cutoff value for negative), but she was also kind of shady and I got a bad vibe from her. Another LLMD said she thought my symptoms sounded more like Babesia. Has anyone had a similar cluster of symptoms, and successfully treated it?)

Thanks for reading.

You mentioned cycling through Buhners bart and Babs Herbs - how long were you on each? And did you get to higher doses? Took them 3-4 x daily?

Since you were “barely” positive for Bart plus some symptoms that could indicate bart - Id continue treating Bart - but you could also have Babesia - the static in ears could maybe be a form of tinnitus?
My LLMD treats all patients extensively for Babesia regardless of presenting symptoms - he says it often needs to be treated before you can effectively treat the other coinfections.


What are you currently taking that you think could cause kidney damage?

You can lower the doses if you aren't tolerating them well. Buhner's protocol can take months to start really working (according to his book, which I'm reading right now). If some of the herbs are bothering you, you can substitute them out.

Get your kidney and liver enzymes testes regularly. Lots of things can cause back pain. I just tweaked my back the other day while running (although fortunately it is starting to get better).

I get what you mean though, the Difulcan I'm on is starting to not agree with me (or at least I have cramps after I take it, I don't think it is a coincidence since it's happened twice now).

1yrinVA said...
Thanks for your responses.

I did an (admittedly weak) month-long modified Bartonella protocol for one month (dosing 2-3 times daily), which was:

Japanese Knotweed
Milk Thistle
Alchornea Cordifolia
Sida acuta (only ~1 drop at a time since I'm super sensitive to it)
L-Arginine (only experimented with this for a couple weeks)

Then I did a modified Babesia protocol for 2 months, dosing 3-4 times per day (plus adding back in Lyme herbs)
Japanese Knotweed
Cat's Claw
Cryptolepis
Bidens pilosa
Sida acuta (still just 1 drop)
Ashwagandha
Stevia - experimented only at encouragement of LLMD

I'm thinking the Bidens + Stevia + high dose Crypto could be responsible for the kidney symptoms (back/flank pain and worsening fatigue).

Not really sure where to go from here, but I suppose I could experiment with not treating for a few days and see what happens. I've been going continuously for 3 months now and I don't think my body is a fan of it anymore.

okay - one month on bart protocol is not long enough...you need many months...maybe try the Houttuynia as well.

And 2 months for babesia isn't long enough...need to do a minimum of 4 months.

Hello,

I get the "heat-layer" and cupped-owl eyes facial heat!

I discovered two things cause/intensify the facial heat sensation: mold & inflammatory foods.

Is your room or house moldy? Is your diet non-reactive?

Secondly, I also suffer bi-lateral kidney/back pain when I take certain herbals, supplements or meds.

If this happens, I take a medicine recess, let the back pain reduce, and then began my supplements/herbs again, one by one, until I find the culprit.

Also, for me, carbonated drinks, like alka seltzer gold and coconut kefir, cause intestinal discomfort, resulting in a backache.

And, yeah, like everyone else has said, treatment will take a while and it's always a good idea to get renal, hepatic, CM panels whenever you have strange backaches. Stick with it!

Thanks guys for the thoughts and encouragement. Yeah, I really should go back and have kidney/liver function taken.

LymePiper - Do you know which infection you attribute the "heat layer" symptoms to? Have any particular treatments helped the most for you? (In addition to the diet and mold avoidance)