Your protocol versus: Dr. protocol

[SSS]

I have wanted to hear feedback on this topic, but also feel cautious.

 

I am very, very grateful for our LLMD- it is so ludicrous to try and get treatment for this disease.

 

I took dd and myself to get blood testing today- 2 separate labs will not send to Jewish hospital- cannot get these tests done where we live,

and these tests I do want to track and get done.

We both have orders for other testing- no, not CBC or liver checks, which yes, I do find imperative -

but rather further mold testing tests, which I thought I communicated I did not want to go further with-

more mold tests to the tune of $2,600.

 

We won't be getting these done. I ordered RN multi immune system complex supplement, as I feel a need and desire for this to take. Didn't 'ask or check'

 

Do you have 'input' with your treatment- say you feel a certain co-infection is at the forefront- do you say, I want to work on this longer?

What if there are supps, etc. you are not comfortable with-

 

I have been doing bio-med with my dd for 2-3 years now- I research like crazy, and have honed an intuition, if that makes sense.

I certainly don't think I know it all, and do take direction, and follow directions well.

 

Wondering how your recovery decision making process goes.

[LNN]

Follow your instincts. As far into your journey as you are, with your ability to research and know your kid, I think you need to be heard.

 

I think there are some areas where to doctor needs to have the final say and others where the parent needs to have the last word. What type and dose of abx is a doctor thing. What supplements, IMO, is a parent decision (unless the doc offers to pay for it all ). When we started with our LLMD, he definitely drove the bus. Over time, as I've learned more, I've become more of a co-pilot and we do more discussing back and forth. Some docs seem comfortable with this and others don't. Some patients want this and others don't. I think finding a long term doctor is like dating - expensive dating, where you have to pick up the tab, with a limited number of eligible dates.

 

It sounds like you have reason to be frustrated. FWIW, I'd have done the same thing you've done - not gotten the additional blood draws. Can you call his office and specifically request that they fax a lab req to a local lab for CBC (and not mention that you aren't doing the other labs)? It sounds like your do isn't hearing you. But what to do about that depends on what your options are.