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Do you tell your doctor everything?

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Posted 6/1/2017 6:31 PM (GMT 0)
I started taking activated charcoal on my own, and I'm going to add red root. Debating whether I should tell LLMD at next visit.

I told him at my lab visit that I changed mino back to doxy, and I haven't told him I changed the pulsing regimen he prescribed.

He has this machine I've never seen before, where he'll place a med/herb on it and touch me with an electrode type thing, and the machine tells him if I need that med/herb. I think it's bit too "out there".

I feel like they are guessing, so as long as I'm not taking something that will impact the antibiox or herbs he prescribes, does it matter?
Posted 6/1/2017 6:46 PM (GMT 0)
My acupuncturist does electrodermal testing (EDT). It is weird and yet, he has always given me the right thing. I did not go to him for lyme when I first got it. I went with an LLMD in a big city (for me it was a big city). Then I wanted to do herbs and went with another LLMD.

I probably should have gone to the acupuncturist initially, but he is $150 for the first visit and $60 a pop thereafter and that is just a visit with the EDT and no needles. That would have been extra. I had acupuncture for my knees and it was so very helpful, but too expensive for me to maintain.

Now to answer your question. It depends on my relationship with my doctor. With my GP, I told him I had lyme and he asked if I was being treated. I said, "yes, with herbs." He said, "how is it going?" I said, "fine." He said make sure you take good care. I left out the part where I was treating myself. I left out the part where I had taken an herb and got sick. I left out the part that it was slow and frustrating. I left out the part that some days I was super depressed and cried all day.

I picked who and what I told stuff to.
Posted 6/1/2017 6:54 PM (GMT 0)
I used to, then I realized that she was ok with most stuff anyway.

Then I realized I was teaching her alot.

Then I got too tired to mention everything.

I'm happy to have her but sometimes, after researching a topic, I know that I'm going to do it whether or not I have her approval.
Posted 6/1/2017 7:18 PM (GMT 0)
First, I think it's important to be working with someone you trust who is a support. Your LLMD should be this person. Why would you not be comfortable telling him something?

Second, it's important your LLMD knows the full context of who and what he/she is working with. Some of them can get a little dogged in their protocols but you are the patient and they need to work with you. Maybe through your experiences the LLMD can learn a thing or too. THAT is exactly how they develop their Lyme experience - through their patients. It's not exactly fair, since we are paying them, but that is our pay-it-forward responsibility to the next Lyme generation... bless their souls.

Also, I don't think the changes you're talking about are a big deal so I can't see that he would have an issue with them but I don't know the guy.

If this were a regular MD, I like PeteZa's response...

-p
Posted 6/1/2017 7:46 PM (GMT 0)
It depends on which Dr. and what I'm discussing.

My GP is learning....and quite receptive...but to a point.

I did ask her about ordering abx online...what her thoughts were. (I said I didn't know how long my ND was going to treat me...)...and her response "You shouldn't be telling me this".
LOL.
I then told her that I'm not accepting the symptoms I still have and possibly have an untreated Babesia infection.

Then she told me that I should go across the border if need be for more treatment to a LLMD.

I'm surprised...really...that she isn't poo-pooing my continued treatment...

But, there are a few 'secret's I keep from her...

My LLND? I have changed my meds a few times...(using leftovers he previously prescribed) and I don't call him and ask him..I tell him at the next appointment...so he does know. (I may have forgot a couple times)

I did exaggerate my bart symptoms when I had only done lyme treatment for many many months and had plateaued. Maybe not exaggerated - but 'highlighted' them...and didn't talk much about the other ones at one appointment.
And he prescribed Rifampin for bart.

Some of us don't have a lot of choices...so often finding another LL Dr. isn't practical.

As far as changing the pulsing protocol...I did tell my LLND. I told him after the fact...that I had started pulsing and what were his thoughts...that way he didn't feel like he was excluded. And he was fine with it.
Posted 6/1/2017 8:57 PM (GMT 0)
I think I have reservations because my LLMD has only been treating lyme a few years, and I was feeling really good until the last appointment when he made a change. Maybe it would have happened anyway, but he's mentioned bart from the beginning and not given me anything for it yet so I want to get his focus there. I'm also not sure if the mottled skin might be something else like babs or myco (if I got that right).

Maybe if I tell him what he suggested last time was making me feel worse, so I modified it and added these things.

Today my arms are really hurting again. I can't raise them more than shoulder high. Sometimes I feel like I could do herbs on my own and not feel any worse, so that's part of it too.
Posted 6/1/2017 10:06 PM (GMT 0)
How can you tell EVERYTHING to ANY person in the planet? I wonder...

Why should there be just ONE KNOWLEDGEABLE person that you should trust your LIFE, while all the other practitioners are... not trustworthy??

Most supplements in energy medicine do not interfere with drugs or other treatments...

If you are able to spend 2-3 hours with the MD, why not telling him everything? If he understands about everything...

But I would just concentrate on what EACH practitioner can do best, and talk about that with him / her.

Most MDs have no idea about EAV tests, energy medicine, or don't believe on things like acupuncture, chinese herbs, muscle test, homeopathy etc.


I keep my feet on the ground, and change my attitude towards people (LLMDs are people like you and me) according to the situation (their available time with me, their experience and expertise, willingness to listen, openness).

If they are closed minded guys, I don't open my mouth to mention other things I'm doing.

It's MY life on stake. Not theirs!
Posted 6/1/2017 10:25 PM (GMT 0)
Interesting thread. I have this exact dilemma because I added red root, mostly based on intuition and I read that it relieves left-sided pain, which is my main symptom. I discontinued it so I won't have to have that convo with my doc. I tell her everything with the assumption that I can always just go on my own if need be. She's also not really open to suggestions.

What did you add red root for?
Posted 6/2/2017 12:14 AM (GMT 0)
Yes, for the most part I am putting my trust in my LLMD and in turn I need to be honest with her about what I am doing. For instance I told her I had started self treating with cannabis. Her only question was, does it help? Yes? Good!
There are some egotistical, my way or the highway type docs in all fields. But I am thankful that everyone on my healing team are open to learning from their patients as well as giving me the direction I need to move forward.
Posted 6/2/2017 12:21 AM (GMT 0)
No, I don't tell my GP every, she isn't lyme literate and I've decided not to bother any more. I do send updates and will see her for my annual physical. It will be interesting to draw up a new symptom list and compare it with the initial symptom list next time I see her. She is in full support of me pursing the lyme protocol, just doesn't know anything about it.
Posted 6/2/2017 1:29 AM (GMT 0)
dogsblood - I read it was good for the lymphatic system, and I'm trying to focus on systems. Circulatory, lymphatic.

I am lucky if I see the LLMD for 30 mins, and he isn't the most organized. So I don't want to distract him because I really want to talk about Bart and about the general plan so I know how long he thinks I'll need meds! I realized this on the way home tonight.
Posted 6/2/2017 2:47 AM (GMT 0)
I have learned to not even bother bringing up symptoms with doctors anymore. Unless I have bronchitis.

I don't have an LLMD, and never will. I wouldn't go at all if I didn't need lab monitoring and prescription refills.

My Internist has made it clear he does not want me to talk about Lyme to him. And believe me, he's more open minded than the rest of the specialists I've seen.
Posted 6/2/2017 6:18 AM (GMT 0)

PeteZa said...
It depends on my relationship with my doctor. With my GP, I told him I had lyme and he asked if I was being treated. I said, "yes, with herbs." He said, "how is it going?" I said, "fine." He said make sure you take good care. I left out the part where I was treating myself. I left out the part where I had taken an herb and got sick. I left out the part that it was slow and frustrating. I left out the part that some days I was super depressed and cried all day.

I picked who and what I told stuff to.

I agree you have to feel them out. When I told the doc I treated with horse Ivermectin, I think I told him too much. I am lucky to still get Xanax and Ambien from him. I am done telling him anything.

Now I tell him I am fine, because he insisted that I am fine, so now he is just another drug dealer to me and my guess is as good or better than his. Recently I told him I am feeling better and I am not lying, but its all he wants to hear anyways.

I am two controlled meds away from not needing him at all. I have cut my Xanax and ambien use in half with no help from him. He is just happy that I ask for less.

Lst year I told my former pain doctor that I was replacing Oxycontin with Kratom. He said you cannot do that and have to come off slowly. I said I already did and it had been over 3 weeks since I last used Oxycontin. He then said well I guess you are in the clear then, congratulated me, and that is the last time I saw him.

You guys all know your bodies better than you sometimes give yourself credit for. Trust your instincts and err on the side of caution until you know what you're doing.

The body will tell you things if you are listening. This is a great place to learn from others who have learned how to do this.
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