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.
Posted by Keebler (Member # 12673) on :
- 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.
"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 . . . ."
An excellent patient education & advocacy organization -
Posted by Keebler (Member # 12673) on :
- 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) -
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Keebler (Member # 12673) on :
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.] -
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by ohioperson22 (Member # 47837) on :
Thanks for the posts, info, and advice. Much appreciated.
I am going to see a local LLMD, and will see what the situation is.
Posted by Keebler (Member # 12673) on :
- 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.
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.
Links here also to finding LL ND (naturopathic doctor), many books detailing herbal approaches, etc. -
Posted by Lymetoo (Member # 743) on :
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.
Posted by ohioperson22 (Member # 47837) on :
from another of your threads, you say: "For miscellaneous medical reasons, I can't take most antibiotics" end quote
Yes, I cannot take any antibiotic that is associated with prolongation of the QT interval (which takes out fluoroquinolones, sulfas, macrolides, clindamycin, azoles, chloroquine, etc).
Can't take penicillins due to allergy. Therefore have a really difficult time attempting cephalosporins without a 10-20% chance of trip to the ER, if the ensuing anaphylaxis doesn't cause expiry.
So that pretty much leaves the tetracyclines, which are not without their side effects in me, but which I understand do not do very well in monotherapy for lyme.
Posted by WPinVA (Member # 33581) on :
Well, some LLMDs are better than others. Just as some PCPs are better than others.
Find your closest Lyme support group and ask them for recommendations of LLMDs.
Have you read "Why Can't I Get Better?" by Dr. H? That's an excellent place to start a Lyme education.
For me personally, with my LLMD it is not all Lyme. I certainly did have a raging case of Lyme and probably have vestiges still.
But we are not really focused on that at present because along the way I picked up a bad case of CPN so we treated that for a while. And focused on detox, adrenals, thyroids, etc. This is all very complicated. It's usually not *just* Lyme. Which all comes back to finding the best LLMD you can.
Bottom line - no I would not steer away from all LLMDs because you think they are all automatically going to say you have Lyme. I can tell you that it's much more likely that PCPs will automatically say you do not!
Posted by TF (Member # 14183) on :
Here is a very recent story for you:
A guy came on LymeNet looking for a lyme doctor. I sent him to the one I am currently recommending to everbody.
The guy saw the doc and wrote back to me cursing because the lyme doc said he didn't think the guy had lyme.
The patient is badmouthing the lyme doc saying the doc is just protecting himself from a lawsuit by refusing to say the patient has lyme and refusing to treat him.
The lyme doc is ordering more tests! And, this is how the patient reacts.
Posted by Catgirl (Member # 31149) on :
I wouldn't waste my time analyzing if an LLMD looks into a patient's situation or their approach to lyme diagnosis. They have been correctly educated by ILADs and they take extensive info from patients, which takes time to acquire.
Lyme docs have way too many patients who know they have lyme. Patients who have slid down hill and no other doc has been able to help them. Those are the patients they treat, not the ones who question the diagnosis (they are too busy helping people who want and need help).
You can chase similar symptoms until you are blue in the face. A friend of mine has done that too. We've all seen people do it here as well. If you really want the help, you will find a good LLMD.
Read Cure Unknown (Weintraub). It will open your eyes. Best of luck!
Posted by Tincup (Member # 5829) on :
Ohio,
Doctors treating Lyme patients all have one thing in common. They were all doctors first.
The reason they are treating Lyme can typically be put into one or more of three groups.
1. They have it.
2. Their family or a friend has it.
3. They are in an area where so many have it they have to do something.
The reason many Lyme treating doctors are good is that they, like all of us, have to and want to do their research and use common sense to find answers. Something the "idiots" won't do.
None of the good doctors want you to have Lyme. I've sent people to Lyme treating doctors who I knew didn't have Lyme simply because the patient had "something" and needed a gentle hand and good diagnostician after being beaten down by the idiots.
Generally, they are just GOOD doctors.
Posted by ohioperson22 (Member # 47837) on :
Ouch, just got off the phone with one office.
Minimum $2400.00 for office vists alone (which you can not minimize or reduce in time/frequency). Then more for testing and treatment, obviously.
Yeah, a bit above my budget. In process of contacting the only other one (or two) within 100 miles of me.
Yikes.
Posted by me (Member # 45475) on :
Can you travel? I travel to see a good LLMD that has "reasonable" prices, comparatively speaking.
Posted by TF (Member # 14183) on :
I would trust the opinion of a poster named Ann--Ohio.
If you click on her name, you can write to her and ask her who is really good in Ohio.
She probably can tell you the doc's prices and typical wait time for an appointment also. She helps everybody in Ohio from what I see on LymeNet.
Posted by LisaK (Member # 41384) on :
my mother was amazed that no 40+ or so drs in 15+ years ever thought I had MS .... I never thought I had MS but I guess that could have been something they could have told me I had....
I am now amazed that no dr has ever questioned pernicious anemia.... it is very similar sx to lyme. now I think I may have that (PA) - I already know I have B12 def. but it also doesn't surprise me that no dr thought of it anyway because that is jsust another thing that no dr seems to know anything about just like lyme!!!
i think I will never be well. no matter what they all say, do , think, give me, etc etc etc..
it's gotten to the point of rediculousness for me.
and keebler, did you just say above find LLMD trained ILADS? that is one huge fete. I have found drs that say yes to that and they are in no way . I think people, including drs, tend to currently make up whatever they want nowadays.
good luck to you. I hope you have way better luck than I have had. im still not giving up though.