tldr - Worst week or two in a while. am I doing something wrong or should I expect this, esp after a treatment change? (Cowden to Buhner)


So I feel like I've been going downhill for the last couple of weeks. Especially last week - more pain than usual (some in the knees and some hard to pinpoint), very fatigued, lightheaded, foggy head, etc. My usual symptoms, but to the extent I could hardly leave the house, and forget working on much of consequence. Probably at least half of my waking hours lying down.

Some depression too, but then again sometimes it's hard to distinguish the "can't" from the "don't wanna". If I weren't a Christian, I don't know how I would possibly handle all of this. But I digress...

A month or two ago I switched from the Cowden protocol, roughly half strength, to Buhner's, about half strength also. Not sure if this present downturn is related to that - I have ups and downs that usually last 2-3 weeks noticeably, but this one seems deeper and longer than usual.

So now that I've realized that, I'm trying to figure out what may be going on, and if I can do anything. I had some basic blood work done two weeks ago and it came back mostly "normal" (CBC, CMP, UA). Cholesterol is still way too low but not as bad as 6 months ago (I have another thread on that). TIBC and UIBC were both on the low end of their range, don't know if that's good bad or indifferent.


Current theories I've come up with -
--Current tx is not working very well?
--Current tx IS working and overwhelming / herxing me?
--Just the normal ups and downs?
--Peeling back onion layers (and so a good thing)?

As of Saturday, I restarted my previous level of Cowden, and added full-dose tinidazole also since that usually helps. Too early to say for sure, but I do seem to be doing a bit better already. The fact that I can sit here and think through and type this out is a good sign. (But even if so, is it a consequence or a coincidence??? Round and round we go.)


Thanks for listening. As I'm sure you know, it helps just to talk through things; any wise advice / experiences are a bonus!


FWIW, I have not read Buhner's book. I think I'm just overwhelmed with information and theories. I just bought a "Buhner starter pack" from Susquehanna Apothecary and also added teasel. Can list the other ones I'm taking if it will help.

Lyme_CJ said...

Some depression too, but then again sometimes it's hard to distinguish the "can't" from the "don't wanna". If I weren't a Christian, I don't know how I would possibly handle all of this. But I digress...
...
Current theories I've come up with -
--Current tx is not working very well?
--Current tx IS working and overwhelming / herxing me?
--Just the normal ups and downs?
--Peeling back onion layers (and so a good thing)?

... (But even if so, is it a consequence or a coincidence??? Round and round we go.)

The EXACT nature of Lyme and treatment that overwhelms us all. Every single person and doctor is going to have a different opinion, and someone will tell you, no matter what, that you're killing yourself with that treatment.

I too am relying on my faith to guide me through this. I literally prayed, "I give up. I have no clue what I'm supposed to do. Show me." An almost miraculous series of coincidences and new people coming into my life have indeed shown me.

We really do need compassionate doctors willing to communicate, and a community to talk to and compare stories with. No one can tell you what's happening for sure. The right track is definitely just as painful as the wrong one. I encourage you to cling to your faith, because it really is the only way to know/believe you're doing the right thing.

Hang in there.