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Not so sure about my LLMD

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Lyme Disease
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Posted 4/11/2015 2:15 PM (GMT -5)
Her patients really like her, or so it seems. The blood tests she had me do were right on target. The exam was very thorough, and she talked to me for a long time.

She and her receptionist are pretty disorganized. She has a text line for her patients, but doesn't always answer her texts. She says she does, but she doesn't.

Ok, to be fair, she has, or had, Lyme disease, so that probably accounts for a lot of it.

The receptionist is a bit grumpy, but she probably has too much work to do.

The LLMD put me on a dose of thyroid medicine (Nature Thyroid) that was way too low.

She gave me Beta Glucan for my low immune globulins, but I don't think it's working.

She's giving me (some) abx, and I have a history of C. Diff.

The receptionist didn't send my records to my PCP on time, and the PCP was pretty POed.

I do like her, but some things are off. As far as LLMDs, I don't really have another choice in NC.

There's one other LLMD, but he farms his patients out to his PA, and the PA is awful (apparently). He also charges out the wazoo.

Is it self treatment and/or protocol time?

Margaret
Posted 4/11/2015 2:45 PM (GMT -5)
Doesn't sound that great honestly. What is your treatment with her though? Do you think.its working?
Posted 4/11/2015 2:56 PM (GMT -5)
Hi IHL,

I don't know yet, bc I'm doing the treatment at a MUCH slower pace than what she recommends. I think she has me on a good protocol, but I'm worried about the abx (she also has me on herbs).

Do you like your LLND? Just wondering.

Personally, I think 98% of doctors are a mixed bag, or at least, I'm starting to think that.

Margaret
Posted 4/11/2015 3:11 PM (GMT -5)
What ive learned is that most llmd are not up to date experts unless they treat lyme only. I take what mine says As suggestions and compare them to what i read online. I basically use mine as a means to get RX meds And antibiotics. And blood tests.

Hes a real good doctor but as far as lyme goes, hes not on the bleeding edge of lyme things. Even though hes ILADS. not discounting his knowledge but i just want the most established and updated treatment advice.

Its just frustrating to read contradicting information and then have your doctor recommend something that doesnt align with most things you research.
Posted 4/11/2015 3:27 PM (GMT -5)
Sometimes my LLND is really good, sometimes, not so good. Where I'm located, he still is the most experienced LLND.
I evaluate everything he says...and if it doesn't sit right with me, I don't do it.
He has never discussed detoxing with me....which is strange being he is a Naturopathic Dr.

I'm sorta stuck with him...and I "use" him to prescribe the antibiotics...
Posted 4/11/2015 5:08 PM (GMT -5)
I agree with Mr. Mike on this one - you have gone through a lot already, Margaret and to have a little help along the way would be a good idea still for you, I would think.

Most doctors do start you off on a very low dose of thyroid meds and then work you up very slowly - it's taken me most a year (10 months) to find my right dose, as they assumed I only needed a small amount since all of my numbers "were good", although I had thyroid swelling. So I started out on 1/4 grain and am now up to 1 & 3/4 grain and doing much, much better! I could likely up the dose slightly, but I'm having heart palps a couple times a week, so my doc doesn't want to raise it any more.

Your doc has their hands full with you, because you have so much going on with your intestinal issues on top of several infections. If you can, I would say give them some more time.
Posted 4/11/2015 11:19 PM (GMT -5)
I think things are off with most doctors including LLMDs. THey are not God, they are human beings and they are prone not to be perfect.

I have had a similar experience as you. The receptionist is jumpy and even my LLMD was a little jumpy last time. THey both had/have lyme, so I do think it changes us.

OTOH, they know what we are going through and we also understand what they are going through. THere was a LLMD close enough to me, but I've seen some reviews where people were smashing him for being late all the time and falling asleep while he was talking with patients. Sometimes they want to be and look tough but who knows what they are going through themselves... I know I couldn't have worked even if I would have tried. My brain was fried...
Posted 4/12/2015 1:03 AM (GMT -5)
Be careful on taking lower doses of abx than your dr prescribes. When I was looking through paperwork to find my info on biofilms I came across pages I had printed right after I got my diagnosis.
One of the key items mentioned was if abx were taken for too short of a period of time or at too low of a dose, this can lead to resistant organisms.

If your Dr doesn't mention detox ask for it. Their dealing with an overloaded practice. For you their your only Dr. You have to be your own advicate. If you don't ask they can't provide.

Traveler is right. A little goes a long way when it comes to thyroid meds. I was on the same dose of Synthroid for 20+ years. It was kept the same even when it was realized that I only have half of my thyroid. It was raised by .25 because of the Lyme. The normal range is large and many Dr's are ok if your anywhere in that range even if your at the low end.
Posted 4/12/2015 8:57 AM (GMT -5)
But, being at the low end isn't good for a person's thyroid or for a person to try to heal from something as complex as Lyme either - so I'll go a step further and say that if someone has thyroid tests coming back and they are in the low end of "normal", it's time to find a good doctor that will truly evaluate your thyroid an is willing to medicate - at least while that person is healing. I found my doctor through a list on this site:

www.stopthethyroidmadness.com/how-to-find-a-good-doc/

And the lower doses are good to stick with, if you are building up to a higher dose soon - or

You can't tolerate higher doses at this time and are working on trying other things to help. Even at the lower doses, it can be helpful to stay on the abx - this is why a LLMD/LLND is needed. They have the training to know when to say either stay on or come off the abx for a while when circumstances warrant it.

At least that's my view of it.
Posted 4/12/2015 10:35 AM (GMT -5)
Hey margaret- I really like my llnd.

I hope more time is all you need. I wish I had some advice but I have no idea.

I'm so sorry that you feel like crap. I'm always thinking of you. And I never did get any emails from you! I wrote you one!
Posted 4/12/2015 3:21 PM (GMT -5)
Hey Margaret,

I'm pretty sure I see the same LLMD as you do. I think things are quickly coming to a head with her receptionist. I've had problems with her not faxing lab orders, not following up on messages I left, etc. I always let the doc know when these things occur. Do not be afraid to speak to her about it. She knows, trust me.
Posted 4/13/2015 2:49 AM (GMT -5)
Hey Margaret and Daisys mom....one of you mentioned living close to Chapel Hill. My daughter is in Raleigh and we will be going to visit in June or July. Grandchildren too. I do hope to move there in a year or so. Is there an LLMD in the area you would recommend? I hope to move there in a year or so when we sell our home. Love the area. I diverge, what I was thinking that if there is an MD there I could make an appt and see them when I come to visit. Could either of you email me the name. Thanks and maybe we can meet sometime in our journey!
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