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This topic has been moved to Medical Questions.     next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » General Support » Question about LLMDs diagnosing lyme

   
Author Topic: Question about LLMDs diagnosing lyme
ohioperson22
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So it seems from reading hundreds of lyme-forum posts, that "LLMD" physicians will AUTOMATICALLY treat lyme, sometimes regardless of the level of clinical suspicion.

I guess my question is: has a "LLMD" ever evaluated a patient and determined they do NOT have Lyme disease, or that it is not causing their symptoms, even if their symptoms do overlap with lyme?

There are hundreds of parasitic/bacterial/viral things that could cause similar symptoms that are not tick-borne, and there are also hundreds of non-infectious disease processes that could cause some similar symptoms.

Will a LLMD really look into someone's situation, or will they *automatically* treat (as they allegedly do) with only a couple of non-exclusive criteria (such as an IND band, and symptoms)???

I'm not doubting anyones (or my own) situation with respect to lyme disease; I'm just specifically asking about LLMD approach to DIAGNOSIS.

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Keebler
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A LLMD's approach to diagnosis: find the truth. Address it.

No LLMD "automatically" treats lyme. None. There is a thorough diagnostic approach that is required. Their training, experience & brain power are key in the diagnostics. You need a doctor who is well educated and who can think.

But, as a patient, what they use to determine the situation is not just on a test page. They need to see you, hear you, study your history, symptoms, clinical presentation, how your body gets along in life situations, etc.


It is very rare that a person even goes to see a LLMD who has not already been through a long process that points to lyme. That's one reason why most LLMDs do wind up treating.

An ILADS educated LLMD or LL ND has training and experience to see the signs, know what to look for and - yes - if they don't think lyme is an issue, that's been said to some.

It's just that no one goes to a LLMD who has not already done a "screening process" so to speak.

And, nearly all LLMDs and LL NDs do address other possibilities as well. No one ever just thinks lyme and leaves it at that. Lyme rarely (if ever) travels alone.


This may help:

https://www.youtube.com/watch?v=uj0H3T9HMeQ

"Why Can't We Get Better?" - slides are not showing, but his book has detail - once at YouTube, you may see other videos of this presenter where there are slides.

VIDEO

One Hour & seventeen minutes - video presentation

Recorded at Western Connecticut State University on May 12, 2015.

Sixteen point model to consider with any diagnostic approach and treatment plan for lyme / tick borne infection / chronic stealth infections . . . .

" . . . Really, there are solutions for a vast majority of patients . . . ."

website & book: http://www.cangetbetter.com/

by a leading ILADS LLMD - November 2013

- Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease
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Keebler
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www.ilads.org

INTERNATIONAL LYME & ASSOCIATED DISEASES SOCIETY


http://www.ilads.org/education/physician-training.php

ILADS PHYSICIAN EDUCATION


www.lymedisease.org

LYME DISEASE.org

An excellent patient education & advocacy organization
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Keebler
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So that others can better reply to your specific situation and the REASON you ask the questions you do, here's a post from another thread that you just posted with a test question:

ohioperson22 posted on 17 April, 2016 10:27 AM

You say " . . . ordered my own lyme WB, which I got through LabCorp. I had been having extreme fatigue and other generalized unpleasant symptoms.

Anyway, IgG was positive for p41 and p39. All other IgG negative, and all IgM negative.

I've had (and recently) much dental work, so forget the p41.

Now, I understand p39 is specific to the lyme bacteria, but the question is if antibody production to other antigens could cross-react.

The body produces tens of thousands (millions) of antibodies that are slightly different to each antigen, through mutations in the genetic material coding for the proteins.


I've never been bitten by a tick, to my knowledge, never had obvious EM rash.

PCP says I don't have lyme. However, some of my symptoms are eerily similar to alot of what I've read people describing on lyme forums. "

(end post of ohioperson 22)
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Keebler
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You say that your "PCP says I don't have lyme." (end quote)

I can't get the link to post right now. Maybe later, I'll try again. Just know that:

39 major protein of Bb flagellin Bb specific

some ticks are so very tiny, the size of pinhead. No matter their size, though, when ticks bite, they shoot a numbing agent into the skin of the person so the bite is not felt - and mosquitoes and other vectors can also carry lyme, not just ticks.

and most who contract lyme never get any kind of a rash

Now, lyme is never diagnosed with just a test. Yet, it's important to understand the POLITICS OF LYME . . . how to read a Western Blot from the ILADS point of view . . . and that your symptoms are what matters most, along with any positive bands.
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Keebler
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http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease

This also points to why the CDC Criteria is so out of whack. More detail about that here:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

SEE the WESTERN BLOT EXPLANATION links here regarding lyme.

Other tick-borne infections and other chronic stealth infections discussed, too [such as: mycoplasma pneumonia, chlamydia pneumonia, EBV, HHV-6 and other herpes viruses and enterovirus, etc.]
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Keebler
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Now, then, I'm so sorry that you are in this position. And it can be very hard to have one's PCP say they know best only to realize they are not at all educated in this matter and you will need to go elsewhere, on your own, for further exploration.

I'm so very sorry. Still, you have some very key detail with that #41 and the #39, more specifically. Be sure you have your own copy of that test and keep it for your records.

I hope that you can connect with a lyme support group in your area or find good personal connections here to help guide you.

You wonder if anyone ever gets well (another thread of yours I saw) as you've read many posts from those who struggle, long term.

For many who struggle, treatment was never an option for them. Treatment can be very involved and there is no one-size-fits-all. Finding what works is a process. Any protocol takes time and frequent changes.

Diagnostics may have been delayed, in some cases not just for years but for decades.

Let's just look at you now, though. Yes, it is possible for you to get better, even "recover" from whatever is going on for you to have gone to such lengths as you already have in search for answers.

Yes, for you, it is entirely possible. And, yet, it will be some work. I must stop now and hope that you find the connections you need to make your journey.
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ohioperson22
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Thanks for the posts, info, and advice. Much appreciated.

I am going to see a local LLMD, and will see what the situation is.

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Keebler
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Good to know. Just be sure it's an ILADS "educated" and truly lyme literate doctor. And that you have several recommendations for that particular doctor from those who really know about lyme.

from another of your threads, you say: "For miscellaneous medical reasons, I can't take most antibiotics" end quote

There can be various reasons, of course, just want to be sure that you've not had what is known as a herxheimer and assumed you can't tolerate antibiotics. With key support, some may be tolerated.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.

And, still, there are other approaches. I'd study the RIFE machine detail, get Rosner's book right now, though, so you have that information. Rife might be the most logical way to go once you've had a good clinical assessment and possible other evaluations.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

RIFE Machine - Reference LINKS

Links here also to finding LL ND (naturopathic doctor), many books detailing herbal approaches, etc.
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Lymetoo
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I think they are MUCH MORE OBJECTIVE than your average MD.

My LLMD was very thorough.

I'm moving this to Medical Questions for you.

--------------------
--Lymetutu--
Opinions, not medical advice!

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