Infectious Disease Doctor: see or skip?

They are. Do you have access to a LLMD?

I heard that here on the boards, and went anyways, now, in hindsight, I see it as a degrading experience, and a complete and total utter waste of time.

Why?

The doctor chose her side of the lyme camp wars and did an excellent job of doing that, but at the cost of warping what I was telling her to support her belief system of how it was.

It was insulting to be told, twice, don't you think now that your brain aneurysm is repaired that all of these other symptoms will clear up? As if I was an idiot making things up.

She provided me with opinions that were totally counter to fact as well as what the science supports.

For instance, she indicated that blood that was donated was tested for Babesia before it was used... WRONG!
https://www.cdc.gov/parasites/babesiosis/resources/babesiosis_policy_brief.pdf

She also indicated that lyme is NOT confirmed through tissue samples.

WRONG!
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC153420/

My blood work sent to a non-lyme lab came back negative, and because of this, she took the stance that this 100% ruled out Lyme.
WRONG!

Lyme is a clinical diagnosis, made from symptoms, exposure, history. If one has a herx reaction in responds to treatment, and there is symptom reduction in response to treatment, then the protocol is to continue and complete the treatment.

No energy for links for this.

For me actually, it was necessary to go, to really get why going to an IDD is a total waste of time.

good question!

Whoa. It seems like the world is against us. My doc even degraded a Lyme's doctor based on one story she heard. You could tell by her tone that she does not think it's "real science." She says, "You can't treat on anecdotal evidence." She's 100% convinced of this.

When I told my doctor I was diagnosed with lyme and mycoplasma. He didn't answer "oh really, well there you go, that's what is wrong with you".

He said nothing for a few seconds and then he asked about the mycoplasma (since that is "real"). He asked are you coughing? I said no, coughing is one of the few symptoms I don't have. He then used the answer of "no cough" as mycoplasma either not being real or "obviously" not a big issue.

As if the only symptom of mycoplasma is a cough.

Now after I tell you about Infectious Disease doctors do you want me to tell you about the absurdity of Neurologists?

Be smart and save some money and totally stick with a LLMD.

Questing (multifacetedme) said...
What I don't get about IDDs is WHY? WHY? WHY? WHY? Is it ego? Is it ignorance? Is it stupidity? I thought you had to be intelligent to be a Dr. I don't know if all IDDs stick together. I am just really, really, really curious about this phenomenon. It is the bizarrest thing I have encountered in my conscious life.

I know what you mean, it's like they are all in on it.

But you know what, to give the doctors some benefit of the doubt, I believe they do it not because they don't believe it's real but for other reasons. I think they do in fact know it's real, not "uncommon" and takes a long time to treat. However if they were to treat it, they would be putting their careers in jeopardy and because insurance doesn't cover proper treatment those same doctors wont get paid for it (properly).

So I believe it's more other forces making them behave this way (insurance and medical guidelines they have to stick with).

The reason why I think this, is because my doctor when I first visited him about this asked me a lot of lymie questions. He even asked me if I got a rash (meaning bullseye). When it came to my nero symptoms he even asked me "do you have a feeling of depersonalization". he said that, not me.

And then he prescribed me levaquin. So this doctor deep down knew what was up, but he wasn't "allowed" to say it and he knew that after the abx there wasn't going to be much he could do for me (for the reasons I listed above). Then when I visited him a couple times after that first meeting I started getting the dismissive treatment, when he was the one that one in the first appointment asking me all the lymie questions.

Post Edited (dacarte3) : 6/24/2016 9:39:31 PM (GMT-6)

"I know what you mean, it's like they are all in on it."

It's like a bad dream.

Girlie said...

cr3ativegirl said...
Lol, PeteZa. No kidding! So far, in my count: 2 Neurologists, 4 Primary Care, 2 endocrinologists, 1 hematologist, 1 cardiologist

My count: 2 Endocrinologists, 1 Neurologist, 1 Neurosurgeon, 1 ENT, 4 Primary Care, 1 physiatrist, 2 Chiropractors, 1 Dr. of Chinese Medicine.


So, people...what's your Doctor count? LOL

I can proudly say one. Because I don't accept BS answers. When the first doctor acted shady, I knew I was on my own and other doctors would be a waste of time as well.

I immediately started doing my own research. For a week I researched and studied like a mad person and got my phd in Lyme. My research lead me to ILADS finding LLMDs in a persons area.

And even before my first ELISA test came in I had already found an LLMD in my area. I went to the doc to get my results and I already had my mind made up that even if it's "negative" it's not. They told me negative, I left, came home and immediately contacted my LLMD. And through my LLMD and Igenex was tested positive.

I only "wasted" about 2 weeks. And THE reason is because of this AWESOME forum. I feel the reason I'm not severely sick with lyme and non-functional like so many lymies is because this forum guided me in all the right directions. Especially Traveler.

As an MD I can tell you why people act like this.
It's ego, and inflexibility. They pride themselves on being Men/Women of science and discredit the patient experience.
I take all sorts of herbs, I fully believe this is a real disease (obviously) and I know how debilitating it is. I also know how frustrating it is to have colleagues who just aren't up to date. Who don't evolve along with medicine itself. It is infuriating for me.

And I am a man of science with an MD and PhD from the second ranked biomedical university on the planet, patents, international recognitions, visiting scientist recognitions, have saved hundreds if not thousands of lives, and am going through this with all of you.

If i can believe, they can believe. Its just ignorance and ego and a complex of "don't tell me what to do". Its childish, mostly.

JDB15-good of you to share & hope you continue to do so. I do also think it's also just bad programming, as in physicians are told CDC lights the way.

2blessed~u will be 2stressed for sure if u visit an ID. But along with a neuro, it might be a good idea to do a few diagnostics, regular bloodwork, brain/spine MRIs, muscle & nerve testing. Just remember to keep notes & get copies!

To JDB15,

Ha... You're our double agent ;-)

I'll add one facet to this: lawsuits. Until the CDC, and other widely-accepted institutions of research catch up with what you all know, doctors will not necessarily be too proud--but scared--to go out on a limb and treat. If a patient comes at them after some abx side-effect, they feel they would have no leg to stand upon. I watched my GP wrestle with this just last week.

Everyone's posts have me thinking that the real problem is with the testing controversy. Can anyone help me figure out why the tissue test is so controversial? Why do ILADs say it is legitimate? Why do others say it is bogus? Isn't a test a test?????