My LLMD released me yesterday - yikes!

I'm still feeling a bit stunned...

Yesterday was supposed to be a followup appointment because, last time I saw my LLMD, he was disturbed about the herx symptoms I reported to him as I transitioned to Buhner's Lyme, Babesia and Bartonella protocols.

He had a hard time believing they were herxes and seemed to think my infection was worsening. I say "infection" in the singular because my ILADS-trained LLMD continued to insist I've only been dealing with Lyme....even after I reported the herxing on Buhner's recommended babesia herbs.

Still, he supported my experiment because I hadn't been able to shake the mild peripheral neuropathy symptoms I'd developed while on abx.

Well, I had good things to report to him yesterday. My PNS symptoms are somewhat improved. Of course, he was happy to hear this.

He seemed to finally accept that the herx symptoms I reported yesterday were indeed herxes....especially when I told him I had Lyme-like herxes on artemisinin (which he recognizes is for Babesia).

We discussed my research about asymptomatic Babesia impeding healing from Lyme....and my herxing on Cowden's Enula that motivated me to trial Buhner's Babesia herbs. We discussed Dr. Horowitz's success with a wheelchair-bound patient after treating her for asymptomatic Babesia.

All the while, my LLMD is scratching his beard and seemed deep in thought.

And then he tells me "I don't think there's anything more I can do for you". I almost fell off my chair!!!

I told him I thought I was still infected because I still herx when increasing the doses of my herbs....and he told me there comes a time when the patient has to let their immune system take over. I began to feel a bit nervous

He then quizzed me on the functions of my various body systems (all doing well) and reviewed the monthly bloodwork done by my PCP (all good). He also asked me to provide a percentage of my recovery and he heard 95% which he thought was great. I was also hearing stuff like it's hard to know when treatment is done and there's "stuff left".

Then I heard he still doesn't think I'm a candidate for abx anymore (I heard that back in February) because my symptoms are so mild, it's clear my immune system is healthy and that I take care of myself.

We discussed what I might do moving forward and I mentioned that LLMD's seem to treat Babesia for 5 months (1 month past the life of a red blood cell). I told him I wasn't sure where I might stand with my Lyme and I didn't get much of a response - just a face lol

My LLMD told me to continue as I have been for another 5 months and evaluate things at that point. If I'm feeling good, he thinks I should continue for another month and then consider stopping treatment.

He said some people find that those final symptoms dissipate after they stop treatment.....others find that symptoms ramp back up and they "just" go back on abx. He let me know that he'd put me back on abx any time I wanted to but, emphasized that he really doesn't think I'm a candidate.

I'm to call him in two months to let him know how I'm doing...if I want to. Or, if I'm struggling, to come in and see him. I was basically nodding my head as I walked out the door. lol

Somehow, this seems like a scary place to be in right now.

However, my LLMD has supported me in all the decisions I've made for myself. He told me he trusted my judgement because I'm well-researched. He actually told me I should go to the ILADS conference next week lol (he and his wife (fellow Lymie) are going).

I guess this is good news. I still have to get used to it.

And, I obviously wanted to share.

As always, comments welcome

Thanks, Girlie.

As I mentioned to my LLMD, I think I'm still infected with *some*thing because I continue to herx when increasing the doses of the herbs I'm taking. I'm treating for the "Big 3" so I don't know what is causing the herxes. Truly, most of my herx symptoms are Lyme symptoms with a few overlapping Babesia symptoms.

I'm taking soooo much stuff to help heal my nerves. At this point, I'm hoping things are clearer for me in 5 months lol

Yes, I'm glad he didn't totally release me. He's quite the humble doctor. He's an approved immigration examiner and works closely with organizations to help his minority patients. His fees are VERY reasonable and he spends as much time as necessary with his patients. A half hour is the norm...easily. Maybe he decided to leave things open after I told him how expensive things were getting with the herbals lol

I wasn't sure what word to describe the change in our relationship....I'm open to suggestions lol

Good point, jrpsf!

jrpsf said...
Cd-If you look at it from his perspective you no longer need him. You are treating based on all the research you have done.

If you go back and read your post, your appointment consisted of you telling him what you have been doing and then explaining why with the supporting data.

In a sense you have out mastered the master. I give him credit for recognizing that your knowledge base surpasses his regarding herbals.

I have to agree completely with what jrpsf has just said here. We too were released from our LLMD to find our way with herbs, and K wasn't even at 95%. More like 80%. The LLMD realized there was no more that she could do for us.

After all, LLMDs are just that. MDs trained to treat lyme/co with antibiotics, but no more. None of them are herbalists past perhaps experimenting with a "canned" protocol like Cowden or BW.

I don't agree that you should let your immune system take over at this point if you are still herxing with herbs. When you get to a point were there is no herxing I would perhaps try, but not now.

I almost discontinued herbs a while back after trialling a double dose of CSA on both myself and K for a week or so. There was no response, good or bad. But then I added Dan shen and did get a response (herx) so we still have something going on too.

Herbs don't compromise immune response the way antibiotics do, and so especially if you are using any kind of immune support (astragalus, cordyceps, any of the ginsengs), the immune system will be functioning to it's full capacity. If you are still herxing with herbs you still need them to decrease bacterial load. Just MHO.

After we were released, I continued to go to have K's CBC, CMP, liver enzymes etc. run for a few months to make sure the herbs weren't adversely impacting her. They weren't, and frankly the LLMD really couldn't help us any further than to just run those tests. I was scared to death, but we have made our way and you will too.

If you have questions about the protocols and your response to them, I would direct them to Buhner's associates posted on his facebook page.

jrpsf said...
Cd-If you look at it from his perspective you no longer need him. You are treating based on all the research you have done.

If you go back and read your post, your appointment consisted of you telling him what you have been doing and then explaining why with the supporting data.

In a sense you have out mastered the master. I give him credit for recognizing that your knowledge base surpasses his regarding herbals.

This is how I read it too. He knows you know what you are doing.

PeteZa said...

jrpsf said...
Cd-If you look at it from his perspective you no longer need him. You are treating based on all the research you have done.

If you go back and read your post, your appointment consisted of you telling him what you have been doing and then explaining why with the supporting data.

In a sense you have out mastered the master. I give him credit for recognizing that your knowledge base surpasses his regarding herbals.

This is how I read it too. He knows you know what you are doing.

Thanks PeteZa - your support is greatly appreciated.

It's been hard for me to have complete confidence in my knowledge because it was acquired on a crash-course basis among countless sources. These infections are complex - there's no doubt about it. Sooo much to learn and I don't want to leave any more room for error. lol

Wonderful your good doc is leaving the door open. 95% is outstanding!

My only concern is that you do still have the neuropathy issues, & that they are not yet completely conquered. I'm sure you posted elsewhere, but what Buhner are you doing for this & how much improvement have you seen in this area?

"In a sense you have out mastered the master"

- That was my take too........

At least he's also honest.

rowingmom said...
"Don't forget the use of your intuition as well.

You obviously have a good sense of intuition, rowingmom and I'm thrilled that you and K reaped and continue to reap the benefits of it.

While I think I have a good sense of intuition, I'm not the most patient person in the world. I was amazed to read one of your posts wherein you mention taking 4 drops of Red Root. I started with full dose lol In fact, I did that with most of the supportive herbs because I guess I feel like I "lost time" in healing this year.

I will not deny that I'm completely overwhelmed with the thought of making my own medicine. I'd like to do it because my wallet is hurting badly these days. However, my brain just keeps fogging over when I even begin to read about the different methods of preparation...both with the herbs themselves the the meds we make from them. I asked my husband to help and just discovered recently that he thought I wanted him to just make the preparations.....I was hoping he could help figure stuff out lol

I'm taking like 15 different herbs. Do you have any suggestions on the best way to tackle the project of switching from ready-made tinctures to home-made whatever?

cd3764, Just reading that you want to try and make 15 herbs exhausts me. My advice is find the most expensive one and "tackle" it. Then go down the list slowly and methodically (financially). Take fabulous notes for yourself and for me when I get there. LOL!

Hugs and happy results. From my brief acquaintance with you here, you are going to ACE this if you pace yourself.

~Annette

It depends on what method you wish to use, CD. I used the folk method - which doesn't give you consistent results necessarily, but I couldn't figure out the charts and measurements and I was on my own to do this. It obviously still worked though!!

I still make a few tinctures, and am considering making a few more. One of these days, when I beat my adrenals back into shape, I'll be investing in an Herbalist's degree.