JessicaMommy,
I totally understand how you feel. I found my LLMD through the ILADS referral service and also found myself questioning his care many times along the way.
Admittedly, I chose to see him because he had an appointment available the week after I called and his fees were very reasonable - easily less than 1/2 of what other LLMD's in my area charge....and the waits for those were insanely long.
I chose to meet him because I just wanted to be sure that the post-tick-bite treatment my PCP Rx'd had taken care of things. I had no symptoms after the bite and no rash. However, I developed a couple of weird, yet super-mild PNS issues after going off doxycycline ala my PCP and they gave me pause.
My LLMD clinically diagnosed me with Lyme due to the Bells Palsy he noted in me that was so mild neither I nor my family had noticed it until I repeated at home the cheek-puffing he had me do in his office. Igenex results came back CDC positive and here I am today.
My symptoms have always been mild (except for a few herxes lol). And, they haven't been clear-cut. Many symptoms overlap among the infections so that makes things very difficult for an LLMD when trying to diagnosis. I'm realizing my case is especially challenging in regards to diagnosis because I've had fleeting instances of some symptoms and definitely not the constellation of symptoms that would point specifically to one infection or another.
I was impressed with my LLMD's clinical skills but there were many times along the way that I'd questioned his care....and I'd spend a LOT of time researching and continue to do so.
At this point, I'd rather spend my money on proven herbs....than the $600-1000 it would cost to see a different LLMD in my area....and the hundreds of dollars they might want me to spend on co-infection testing.
Since I long ago recognized the need to participate in my care with my thyroid disease, I realized I could save money and still heal if I educated myself about
Lyme.....and work with my LLMD.
He was the one who told me to start one of the 3 herbal protocols (Buhner, Cowden or White) when he thought abx had done all they could for me and he was concerned about
my gut microbiome.
I've since realized that he knows very little about
herbs and he's been standing firm with his Lyme diagnosis.
Just like DazedPete, I started to wonder if I've been dealing with a coinfection because I just couldn't shake the PNS issues I'd developed on abx.
As I already mentioned, I followed the full Cowden protocol (which includes several herbs specific for Lyme...as well as some herbs for both Babesia and Bartonella). It was the herx symptoms that I had when taking Enula (geared to Babesia), that I started to wonder if an asymptomatic babesia/babesia-like infection was impeding my healing from Lyme. I'd learned about
this possibility through research and sharing on here.
Since Cowden doesn't have a published co-infection protocol and I wasn't inclined to take pharmas at this point, I decided to transition to Buhner's Lyme protocol as well as his Babesia one.
My LLMD didn't understand this decision yet supported me in my experiment.
Well, guess what? After 6 wks. on tiny doses of Buhner's recommended herbs for Lyme and Babesia, my PNS issues have FINALLY improved.
Samento and Banderol *might* be good at healing Lyme - that's what the Eva Sapi study was all about
. Her experiments showed that Samento and Banderol were effective against all forms of Lyme. You do need to recognize, though, that her study was done in vitro.....not in the human body which could make a difference.
No way, no how does Samento and Banderol heal any of the co-infections. Bartonella is a tough one to beat and requires a multi-faceted approach. Babesia requires anti-malarial-type stuff.
It really sounds like you need to have a comprehensive conversation with your LLMD. There's nothing wrong with sharing your concerns about
your treatment and certainly the fact that you are feeling worse.
For whatever it's worth, many LLMD's don't recognize the need for detox. My LLMD looks at me like I have two heads when I tell him that increased detox tames my herx symptoms.
LLMD's are human and they are working with some of the most complex and challenging infections.
We do need to take responsibility for our health. It sucks that any of us is dealing with this but, that's the reality of things.
Nobody has time to be sick. But we won't heal unless we participate in what's needed to do so.
Feeling like crap forever really shouldn't be an option. You could go from feeling like crap to being completely incapacitated. Traveler on here got so bad after struggling with these infections for almost 40 years that she had the "I think I'm going to die" talk with her kids.
I can't picture you wanting that for your beloved children....let alone your husband...or yourself.
Yes, it's frustrating.....and scary. Talking things through can only help. And, it might not be a bad idea to have that talk with your LLMD.
The additional info you shared about
her willingness to try other herbs/supplements is promising. Perhaps there was some misunderstanding with her words about
Samento and Banderol and that's why I suggest a talk with her.
It sounds like you can work with her and that's really the best we can hope for. Only we live in our bodies and it's really best to work in partnership with our doctors rather than put blind faith in them. After all, they are only human....and I'm sure are busy caring for many, many patients.
Hope you feel better!
Post Edited (cd3764) : 9/13/2015 8:34:24 AM (GMT-6)