Infectious disease doctor visit.

[Joeland]

I went to an infectious disease doctor for the first time yesterday. He dismissed my IGeneX results, and wanted to do his own testing thru Labcorp, the lab he uses. I was disappointed, and frustrated with him. He ordered the following tests thru Labcorp.

Red blood count
Complete blood count
Multi organ systems
Lyme PCR
Lyme western blot
Babosis

[cave76]

There are good rants and bad rants.
There are good vents and bad vents.

Rico ranted or vented in a post in a GOOD  way probably because of the frustration most of us feel about the horrible (my word is carefully chosen) 'information' often given to people who are looking for a diagnosis, testing and treatment for Lyme disease.
And did it very well.

Not only do we want to try and help people but we also have to try to explain decades of misinformation, disinformation and just plain lies that can not be explained in a few paragraphs without using too much medical-ese

It ain't easy being us. :)

Nor is it easy for the people who are sick and trying to figure out what's what.
As Pogo said----- Woe is Us---- all of us.

[JackieCalifornia]

Excellently said.

[Ricobord]

Ditto what Cave said.  A Lyme PCR is iron clad when it's positive.  But it is well documented and should not be controversial that it's frequently false negative.  If your doctor thinks it's definitive when negative, he's sorely mistaken.  

Feel free to find and print out a medical paper or quote from a source he'd respect describing how the PCR is often false negative. Take it with you at the next appointment if case yours is negative and he tries to use that to exclude Lyme.  Some doctors are open to being proven wrong.  But be prepared in case yours is not one of them. I've had both kinds and the latter is unpleasant.

The hard part about Lyme for patients is sorting through the mixture of accurate and inaccurate information out there among doctors.  Some doctors are "well informed" by the IDSA and CDC and follow their "guidelines" and recommendations to the letter.  The IDSA requires its members to follow the guidelines with threat of discipline if they don't.  There's enormous pressure within the organization to toe the line.  Since it's the IDSA Lyme Committee who are the most narrow and closed minded about Lyme, it is the ID doctors who follow this mentality.

But then there is a whole bunch of misinterpretation and misunderstandings about Lyme, perpetuated by speeches at conferences, malicious gossip (such as, "IgeneX says everyone is positive"), and just plain stupid conclusions (such as the doctor who a patient said only gave her 2 weeks of Doxy for a bulls eye rash instead of the recommended 3 weeks because he was trying to avoid antibiotic resistance, or the doctors who refuse to treat the definitive bulls eye rash because "There's no Lyme here.")

I was told in the hospital that no one thought I had Lyme because I had a negative test on my spinal fluid, and that test was considered "highly accurate." When I said, "But I read.." the hospitalist rudely interrupted me and barked, "It doesn't matter what you've read!"  

I was going to tell him how even Johns Hopkins hospital had published a paper on Lyme testing saying how spinal fluid testing had a really low rate of accurate positives (as low as 17--18%).  The highly regarded ID doc in the hospital (who refused to come see me as I asked) didn't realize that the "highly accurate" description for that test only applies to a positive result, and that false negatives are the norm.  

But thanks to their obsession with "positive" test results, as ingrained into them by their leadership, they get snippy if you disagree with them.  So the "highly regarded" head of ID at my nearby hospital was fundamentally wrong, even by known, published standards.  Such is the mess that is Lyme Disease.

And then, of course, there is the dogma put out by the IDSA and CDC, which is the bane of our existence and the underlying cause of the "Lyme Wars."  They insist that the CDC two tier protocol is an excellent diagnostic requirement and if you test negative, you must not have Lyme. They also insist that a month always cures it, and any "residual" symptoms will usually fade away in a year and the small number of people with long term residual symptoms must have a Lyme triggered autoimmune disorder.  They ignore the tens of thousands of patients successfully treated with long term antibiotics, and continue to pour money and effort into researching this "autoimmune disorder" with no meaningful conclusions or benefit to patients.

The whole mess is quite mindboggling.

So, in a nutshell, an ID doctor might diagnose you, but only if you test to his/her satisfaction.  Even then, you'll probably only get 28 days of antibiotics, regardless of your progress or remaining symptoms.  If you want to get well, you have to go to a doctor who is willing to treat you until you are well, however long that takes. It's best not to interrupt initial treatment so you don't give the bugs a chance to regroup.  LLMDs can have waiting lists, so I encourage you to look now for an LLMD to go see after your test results are in.

See if you can contact a local Lyme support group. They're really helpful for finding local docs who are sympathetic to Lyme some of whom might take your insurance (if you have any). Coverage is highly variable based on your insurance company and what state you're in.

[JackieCalifornia]

good post.

[cave76]

I'm not quite sure I understand your question but I'm making a guess here----  that you believe that LabCorp and other labs under the mainstream venue (CDC. FDA for example) do their own revisions, updating etc.

They don't. They buy ready made commercial kits that are vetted by the FDA. (Interpretation: Less  cost and faster to process, which means less money)

Igenex and I believe Stony Brook make their own complex and more accurate kits for use only in their laboratories and don't sell them to other labs.

It's a bit like buying a dress or suit off the rack at Walmart or having one specially made for you. (Well, not quite, but you get my drift!)

Here is a quote from a Lyme doctor addressing that issue:

"Commercial laboratories like Labcorp and Quest purchase such ready-made kits for testing patient samples for Lyme disease. These commercial test kits are vetted by the FDA and considered "accurate:"  They do not change year-to-year. These tests are not upgraded anymore than a tablet of aspirin is. Lyme ELISA and Western Blot from Labcorp/Quest done in 2005 and 2013 are the same. Despite claims to the contrary, the test is not better, the ELISA is not more sensitive or the Western Blot more specific."

[Joeland]

How often, if any, does Labcorp revise, or update their testing methods, or pathogen strains?

[cave76]

Joe----- if I'm understanding you correctly you're saying that your doctor says that a PCR is really all that's needed and that the result is iron-clad?

Well, yes and no. :)

A POSITIVE PCR is pretty much iron-clad. So if you get that ---- bingo! You have Lyme and hopefully she or  he will treat with long term and aggressive doses (by 'normal' standards) until all your symptoms are gone and stay gone for at least 3 months. (That's advised by the Lyme guidelines.)

However----- if your PCR is NEGATIVE it doesn't mean a darn thing as to whether you have Lyme or not!

And the chances are that the test will show negative more than positive IF IT'S BLOOD/SERUM they're testing because the bacteria prefers sites in the body other than blood.

So-----let's hope that the PCR test comes back positive and then hope that you'll get sufficient treatment to do some good against this pervasive and persistent disease.

See my description at
http://www.medhelp.org/user_journals/show/975330/PCR-tests-and-Fish-In-a-Pond

[Joeland]

He said all that needs to be done really is Lyme PCR which is ironclad.

Thanks for all replies, I appreciate them.

[cave76]

I strongly reiterate what mojo said above. If you need any help figuring out how to find a doctor that knows how to test and treat Lyme disease (ILADS trained) please let us know. We're willing to help you get the help you need.

An infectious disease is not a doctor you want on your side for Lyme disease--- as witnessed by his dismissal of Igenex labs and insisting on Labcorp!

Now, there's a bare possibility that your tests will come back positive (meaning you have Lyme disease) but treatment by infectious disease doctors will mean 30 days of a very low dose of an antibiotic.

That is being WAY undertreated by Lyme disease guidelines.

You really need to find a Lyme specialist. If you haven't already read the many threads here about how to do that (they're there---- just the Search function) then we'll go through it with you.

[mojogal]

Infectious Disease doctors are the biggest Lyme deniers. You need to find a Lyme literate doctor (LLMD) if you want treatment. You can become very ill and need this ASAP.

IgeneX is the best tests for Lyme and co infections. I assume your test results are positive. Run to an LLMD. You can email ILADS.org and ask them for an LLMD in your area.

We have all been through similar things where people don't believe in Lyme or IgeneX. It's not unusual.

We are here for you to help. Take care.

[Joeland]

It wasn't bartonella, maybe babesia. I don't remember the spelling.