Pissed at my llmd....

I have to first confess my distrust of doctors up front. I have been ill for 6 years and seen 12 doctors, all of who agreed that nothing was wrong with me and I just need Prozac for an anxiety disorder. According to them, my symptoms of hair loss, weakness, fatigue, insomnia, brain fog, and panic attacks, all stem from an anxiety disorder!!! Whatever!!!!

After finally getting an Igenex test, I learn that I do have a lyme specific band, #31.

LLmd has been treating me for 4 months. Ive not questioned her choices of therapy nor have I suggested additional therapies. I simply followed her instructions. HOWEVER, I am not any better after 4 months of treatment. I am now beginning to take a more active role in my treatment plan. It seems anything I request or suggest gets shot down. Usually without much explanation.

At my last appointment, a week ago, I asked to be further tested for mold, parasites, and viruses, as well as heavy metals. I was simply told, "we'll worry about those later." No further explanation. Am I asking too much???? Was that an odd request?? I have gone along with her treatment plan for 4 months!!!! Why was my request brushed aside????

I have since asked to try Byron White's A-bab. Im curious if I might evoke a herx and maybe get a clue if I might have Babesia. Babesia is very common and often goes undiagnosed due to crappy testing! It is a logical thought that maybe Im not responding to lyme treatment because I might have underlying babs getting in the way!!! Why did she shoot that idea down right away also? What harm is it to try A-bab for a few weeks??? Is it really dangerous? Is it more toxic than the flagyl or tindamax or rifampin that she had me on???? I'm guessing not!!

How am I supposed to gain any ground in uncovering my health issues if we are not testing the waters or looking in the right places? Am I asking too much?

She did, however, order a new blood test from Germany to test for lyme and co infections. A very expensive $600 test. Maybe we'll learn something, maybe we wont. I feel like Im learning that there are all these little nuances to lyme that she just isn't taking seriously.

What about that bug that Fry labs uncovered that is frequently posted on here? it gets treated with an antiparasitic called ivermectin. I guess that is pretty common in Lyme patients. Why haven't I been tested for that??

My lack of response to abx, shows that something else clearly is wrong. I doubt taking another lyme test will show what it is!

Sorry for the rant! Im tired of being dismissed by doctors.

....

Post Edited (Utahgal) : 1/23/2015 11:05:02 AM (GMT-7)

You are not ranting;). Think you have valid concerns. Our llnd did so many test in the beginning of my daughters treatment. Kpu, mold, many of the shoemaker test,cd57, marcons, viruses, general bloodwork, hla genetic tests, more can't remember them all.
One that was helpful was the urine neurotransmitter test. Put on something called gabatrex and then serotrex by neuroscience. They r the ones that do the testing.
Some of the testing really did uncover a better path to take with her tx.
Especially if you are not improving after 4 months with her.
There are many times that I have run other options and treatments by our natural path. Sometimes he thinks I'm crazy and other times he is open to changing treatment. I feel like he always listens

I like beyond balance products instead of Byron white.
What are you doing to detox
Also the Biomat really helped my daughter with anxiety and detox.
:)

My complaint is that I do everything she asks, even order a $600 test for lyme when I already know I have lyme....duh!

But why can't I do a 4 week trial of the drug ivermectin to see if it helps? It might??? It can't be any worse than flagyl or tindamax. And those 2 drugs are even known to cause cancer in some people!

And why cant I try A-bab??? What would it hurt to try it for 4 weeks???

At some point we need to move forward. Try new therapies, test different things. Re-ordering a lyme test doesn't tell me anything new.

I do not want to sit and wait for an entire year just to see IF something good finally happens. There could be something very treatable that she is missing.

Heavy metals have the same symptoms as Lyme and should be part of the differential diagnosis from day #1. Not 1 year later after your lyme abx don't work!

I need to start systematically ruling things out.

I think you have valid concerns, Utahgal. Lyme often won't heal if things like mold, parasites or other co-infections are present for some people - others can heal the Lyme first and then tackle the other issues, but not everyone.

Have you checked for other LLMD's in your area? It might be time to find someone that sees things a little differently.

No, you are not being too pushy or demanding. Yes, you need to be proactive with your health - you are the only one that has to live in your body! You have control over what is done to it.

You NEED (not want) to be tested to rule out other possibilities - that's only smart. It's like testing for adrenal issues - they will likely heal as you heal from Lyme, but it will take longer to heal the Lyme if your body is trying to heal the adrenals at the same time. You need (not want) to know what all is going on in your body, what infections, what viruses, if you have mold or heavy metals.

from the perspective of your doctor working for you I think you should feel validated in your requests. You hired her to help you heal. I'm not sure of the time line of testing and treating the entire scope of things. It probably varies a lot from person to person.

You should maybe ask to be tested for everything under the sun and see what comes up. There can't be harm in doing more tests. Information is power!

Have you asked your doc what her....uuh.... plan is for you?

You aren't being too pushy. You're asking valid questions. Just make sure you calmly explain to her that you just want to get well and you're concerned that the treatments so far haven't helped you enough. You just want to make sure you're not missing something big, like babesia. If you have what you want to say prepared and you make your case, I don't see why you can't have a good conversation with her discussing your options.

That's why I had to say something, Green!! I've discovered that doctors opinions get in the way of facts all too often. And so when I know something to not be true, well my big mouth - or is that loud fingers??? - take over!! LOL!