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» LymeNet Flash » Questions and Discussion » Medical Questions » UPDATE: Will Not Be Given Western Blot Bands/Results

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Author Topic: UPDATE: Will Not Be Given Western Blot Bands/Results
Lunaangel
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Super Confused....

Two weeks of ongoing discussions to get my WB "bands/lab report"- other than the typed in "negative" result. I have been given the runaround over and over again.....

I DO have a "positive" Elisa done at the same time.

Has anyone encountered this???? Is there a new "rule"???? Legal loophole???

Thank you-

[ 04-11-2012, 05:24 PM: Message edited by: Lunaangel ]

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steve1906
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As far as I know, if you request any medical results, including (Lyme test) they have to give it to you. I know this is not uncommon to any give out the ("negative") they think were all idiots.

You paid for the test, you deserve the results.

Lets see what others have to say

--------------------
Everything I say is just my opinion!

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Lunaangel
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Thanks-

Yes, I had to "explain" the entire process about 5 times so far.... (not really know if they were 1-really that uninformed, 2- testing me- 3- trying to get me to give up 4-....)

The last guy- I had a feeling he really knew what was going on- pleasant- played dumb the entire time- and even said in his five years there had never had this request- so was surprised and somewhat baffled. He was completely "open" to the possibility that perhaps rules/labs/info had just changed which is why this is happening...

Looking forward to other responses.

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lymeinhell
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Tell them you are going to see a specialist, who has asked for copies of all tests that have been run. They have to give them to you.

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

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Lunaangel
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I did....
3x

Thanks

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steve1906
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Lunaangel, I see you're from "NC" I found the laws for your State:

It's the same for most States, it falls under (Consumer Rights under HIPAA)!
http://ihcrp.georgetown.edu/privacy/stateguides/nc/nc.pdf

--------------------
Everything I say is just my opinion!

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TerryK
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Your right to get a copy of your medical records is governed by your State. I found the same document as steve and it specifically states:

"WHAT RECORDS DO I HAVE THE RIGHT TO GET AND AMEND?

You have the right to see and get a copy of your medical record. You also have the right to correct your medical record by having information
added to it to make it more complete or accurate.

This right is called the right to amend your record. (This guide will call these rights the "right to get and amend.")

Your medical record includes such things as:
Information that identifies you, such as your name and Social Security number.
Information that you tell your doctor, such as:
o Your medical history.
o How you feel at the time of your visit.
o Your family health history.
The results of your examination.
Test results.
Treatment received in a hospital.
Medicine prescribed.
Notes that your health care provider takes.
Other information about things that can affect your health or health care.

You have the right to see or get a copy of these records whether they are kept on paper
or are kept on a computer.
Who has the right to keep my original medical record?

Under North Carolina law, your health care provider is required to keep your original
medical record. You have the right to see and get a copy of it."

This section of the document will tell you exactly what you need to do to get your records:

"2 . GETTING YOUR MEDICAL RECORD"

Good luck,
Terry

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sk8ter
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Tell them you are calling a lawyer in the next 2 hours if they do not personally bhand them to you...This is highly illegal...You may also now include the doctors note, which they hate, just because the suspicion of wrongdoing here I.e. inaccurate or witholding info, is high....this is againn highly illegal....if they say they can only be released to a doctor remind them you know what the law is and you have had enough!!!!! You have the rights to your entire file..they can charge for copies.....
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Lunaangel
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Thank you to each of you- truly...

I am on it....

Supposedly the lab will not give it to the office as well. (same institution/very large/well known too) Just keep telling them they don't need it- it's "negative"-

I will delve into this further- and touch base with the office again re: my conversation with the lab rep. this morning.

Igenex comes in next week-it did it right away after they started the games... but- I still need this for my records/proof/legal rights etc...

Thanks again!!!!

Peace, love and light...

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Larae30
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Wow, that is horrible! I had no issue when I requested copies of all of my results.

--------------------
Treating lyme, bart and babs

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Razzle
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My doctor had to call the lab directly to request which bands were tested and what each band result was...this was Mayo Clinic lab. So you may have to get your doctor to do the phoning around...

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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lymenow
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When are they going to realize it should be Western Blot first......THEN ELISA.

never, i know

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Lymetoo
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quote:
Originally posted by Lunaangel:


Igenex comes in next week-it did it right away after they started the games...

-

??

Keep pushing!

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

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Lymetoo
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Lymenow.. the ELISA is not even worth doing.

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

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Lunaangel
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Lymetoo-

I DID send out for the Igenex- so I am waiting on those results...

I just do not think I should drop the WB situation I did prior to sending out- I may have to for my health- as now they left me a message stating that the lab is angry at the office.... [Wink]

This, I can't handle as I hang by the thread.... [Wink]

Perhaps we will find out soon enough from Igenex WHY I or my Dr. can't see the real results-

ughhhh- so silly- really-

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Catgirl
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Find a good lyme doc. Even the western blot sucks, so try not to worry about your recent test. The western blot has a considerable false negative rate too, so it's more important to focus on a good doc.

Log onto www.lymediseaseassociation.org or post here under seeking for a lyme literate medical doctor (LLMD). I don't know if the docs here are ILADS affiliated though (you WANT an ILADS doc--cutting edge).

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation.

------------------------

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)
-

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TerryK
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Good advice Catgirl.

From what you are saying, this does not seem to be an issue with your doctor's office but more that the lab did not report individual bands.

I've heard that there are some labs that don't and I don't know for sure but they may not be required to report individual bands.

The lab does not sound like a very good lab for lyme disease. No LLMD would use a lab that did not report bands.

Best bet is through IGeneX or MDL. I had results from both labs and all bands that they test for were listed.

LLMD will know how to interpret your results based on individual bands.

Terry

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lymenow
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Lymetoo, why do you say that ELISA is worthless? I understand it's worthless if you come up negative, but if I hadn't tested positive on it I would have never pursued lyme.

I don't understood why everyone says that...if you test + on ELISA, you have lyme at the very least. Seems very important. I know I'm missing something. Right?

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Lymetoo
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Oh, it's just that the mainstream docs think it's the end all. And it's rife with FALSE NEGATIVES.

Yes, if it's POSITIVE, it's a homerun. But many docs think if it's positive, it's a FALSE one.

<SIGH> [Embarrassed]

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

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Tincup
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Certain labs, usually the cheaper ones that have the cheaper tests, do not report bands as a routine thing.

Your doctor must ask for all bands to be reported when the test is done. If not, you may be out of luck, sorry to say.

That said, I've seen doctors that lied about the results, telling patients their tests were negative and they weren't at all.

This was not a mistake, it was a deliberate lie. I have even seen notes written by the docs in the records of patients saying the IDIOTS said even though it is positive, consider it negative according to blah blah blah.

In other words, the IDIOTS have "undiagnosed" people by phone with never having seen them, causing major problems for patients.

BTW- If it was the Hold the Mayo Clinic doing the lab tests, I would have to say in MY opinion, they are by far the lab with the worst results when it comes to Lyme disease.

Bottom line- watch for slick ticks and the doctors too.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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'Kete-tracker
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lunaangel,
I hope you don't mind my asking...
How old are you?

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Keebler
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-
Head's up. Seems the CDC is in a full force campaign to set doctors "right"

The CDC announced a few days ago that doctors must be very strict testing by CDC procedure:

----

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029872;p=0

3/5/12 CDC statement basically condemning ILADS' testing recommendations.

CDC still insists on two-tier testing with ELISA first positive and then on to the Western Blot but they say the IgM is of no significance, basically.

Lots of talk about "false positives" and a sense that they do not like the lyme advocacy organizations.

I can't believe they are so very wrong about all this, even as of just a few days ago, to say these things.

see article at the discussion thread above.
-

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t9im
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We ran into this with the first Western Blot. It came back negative but no band detail.

We requested the detail to no avail (of course having to go through the MD's office) and found out you have to request it in advance when the test is being submitted to the lab (this was Quest in CT).

We had it re run but by then it was IgeneX so we had the band readings.

--------------------
Tim

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Lunaangel
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'Kete-tracker -

I am 42....

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'Kete-tracker
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Hmmm.... And when you asked your doctor's office personnel for copies of your medical records (including all test results) for "a trip to see another doc"- or a specialist, they just wouldn't Comply??

I would call your local State Medical board (usually found in the Capital's local phone book) & "discuss" it all nice & calmly with one of them.
You'll be surprised how effective that might prove to be! [Smile]
----
BTW, any legitimate testing lab should give the Doctor who asked for the "standard" Lyme test (almost always the ELISA screening, possibly followed with Western blots) the results of the ELISA screening- also known as the Lyme titre figure (pronounced "tighter")- which is going to be a # between, say, 0.3 and 1.0

Anything higher (1 or over) would oblige the Lab to run the Western blots to "confirm" diagnosis, as part of an agreed-on procedure to track Lyme cases nationwide.
----
(The reason I asked how old you were was in *case* you were considered a minor in your state, in which case I was to suggest to have a parent ask for the medical records. That's all. [Wink] )

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Lymetoo
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quote:
Originally posted by t9im:
We ran into this with the first Western Blot. It came back negative but no band detail.

We requested the detail to no avail (of course having to go through the MD's office) and found out you have to request it in advance when the test is being submitted to the lab (this was Quest in CT).


-
Maybe that's the problem. This is what Tincup said above.

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

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poppy
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I could be wrong about this, so please correct me, but my understanding is that the ELISA is supposedly sensitive, meaning it picks up things that might not be lyme, so the WB is intended to be more specific. Meaning it would pick up fewer cross reactions.

This supposedly is the rationale for the two steps, and why the CDC claims you should not bypass the ELISA.

The trouble with this is that lyme has been detected by PCR and culture in people with a negative ELISA. So the ELISA is not sensitive enough. There are articles in the medical literature which show it.

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'Kete-tracker
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My LLN.D. bypassed the ELISA. Wanted just the WBs from IgeneX.

Of course, I'd already tested CDC+ via Quest (with a 4.4 titre) 2 months earlier, so maybe he was just interested in seeing what type of bands would show + & to what degree.

This- in turn- give Lyme docs small clues as to the strain of the bug, & helps them decide what antibiotics to choose from.
Atleast that was the drift I got when we went over the IgeneX results in his office.

Re: "...why the CDC claims you should not bypass the ELISA."
I wouldn't trust "rationale" from the '90s, CDC or otherwise!
We're still learning about the disease, and have so much more to discover.

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Lunaangel
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Update: Under Investigation [Wink]

Will know why shortly- either way...

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Milagro
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I was once told a test result was negative, but when I demanded a copy it was positive.

Get a copy of the report, it's your right.

It's also your right to get a lawyer and sue them out of existence.

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Keebler
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-
Most doctors work within a network, say Legacy, Providence, etc. This is not usually the same as your insurance (though it could be).

If so, go to the head of that network in your city. Most health networks advertise within their cities and there are usually about 3-4 per city or region.

If you don't know, find out what hospital affiliations your doctor has and if they all fall under the same business network, that might be a clue.

Get connected to the health network's PATIENT ADVOCATE OFFICE.

Until you get the right person, stay anonymous and do not mention the word "lyme" - just say "specialty test" -

-even after you get the Patient Advocate and you know you've got one who will stay with you though this, try to avoid the word "lyme" if possible.

Say "Western Blot" etc. or the lab where it was done to refer to the test. Or just "that" test, "this" test, the "(date)" test.

Detail below is just good background as you work to get your rest results, it's also important that you get time lines such as the

time of collection (blood work), date shipped, date received by lab, day / time of test, etc.

Some insurance networks ruin this on purpose, starting with end of week blood draw that does not get delivered to the testing lab on time.

--------------

http://www.canlyme.com/seronegreasons.html

27 REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
-

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Keebler
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-
PATIENT ADVOCATE within the health network can also help you review ALL your medical records. You have the right to remark on any errors but nothing a doctor ever writes is ever deleted from a person's medical file.

All you can do is add a note, offering your "correction" that may or may not be seen.

Still, it's important to review files now and then. I was shocked to see the errors - and the errors in judgment and assumptions.

No wonder every new doctor treated me like Kyptonite even before we got past "Hello" - they had seen my file.

It's often procedure for them to do that before new patients. We think we can start over, fresh, but now with the record keeping the way it is, that is nearly impossible.

Part of that, understandably is to cut down on duplicates in drugs, counteracting drugs from different doctors, and the true drug-seeking patients.

Be aware that many MDs think lyme patients exhibit "antibiotic-seeking behavior" - but that's another matter.

Just so you are aware.
-

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Lunaangel
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AMAZING- Suspicion confirmed....(was already working with Patient Advocate-thank you!)

Lyme brain right now- but, for the quick update- Great Patient Advocate going back and forth- learning quite a bit about the politics of the situation-couldn't really keep that out at this stage.

They will not give me an official copy of my results [Wink] . (Yes- I know I can go up the ladder legally.) But, were glad to tell me over the phone that "my results were 23 positive, and 41 weak, and two positive bands = a positive test and that is why it is not a positive" and, indeed, the Dr. should follow up with me on it. [Eek!] After my careful review, clarification, explanation- to be sure we were, indeed, talking about "IgM bands" (considering his explanation) it was, indeed, confirmed that, yes, they were IgM bands. [bow]

I calmly and clearly stated that I will need that in writing on letterhead if I can't get a copy of my official results. He agreed- and thought it wouldn't be a problem. I calmly gave him a heads up and (said more that I probably should have re: controversy). ;( I was just so glad to finally hear it. He said he had heard such from the Dr.'s .....was a good guy....

My only hope is that the letter will not state differently....

This with the Igenex is proof enough now- (unless they change the results...)

Thanks for all of the support- I will reread all again after resting-

Peace-

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Keebler
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-
Well, glad you got some clarification and I hope he sends that letter out straight away.

If he mentions it to any colleague or superior, well, then I will be every penny I have that you will NEVER receive that letter.

Anytime someone says they think "it wouldn't be a problem" you can bet the will CHECK on that.

I hope I'm wrong but my instinct is that:

His boss will not allow it; his clinic attorney will not allow it. No matter how nice he is, or seems, he will be risking his career with such a letter.

It's just important to know that he's in a delicate position between you and the powers that sign his checks and cover his insurance payments.

Unless he's in private practice, with no partners, no HMO that hires his services, he just will not have the freedom to do as he wishes, especially regarding anything about lyme.

It's clear that their clinic has already given this some thought, otherwise, they'd not reject your request for test results.

You do know that some insurance companies PAY doctors to not diagnosis lyme. In some cases, if even ONE doctor in the clinic does, none of them get the bonuses. Now it may not be to that proportion but, chances are, he's not a free agent.

Your results are officially CDC negative but they have to keep that black & white, yes or no faade, and allow zero room for interpretation, from their end. Zero room.

I've never heard of any other test, any other condition for which patients are consistently separated from full copy of their test results.

Yours is not the first time.

You DO have the right to a FULL COPY of all tests you've ever had. It's vital to your future to get those. Don't give up on that. If that Patient Advocate can succeed, ask them how else, who else?

Still, I hope you can get yourself to a LLMD and just move forward, ASAP.
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Lunaangel
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Thank you so much Keebler- and, yes, he is checking- so, I am afraid you are correct. This was also the part where I may have said too much...;( either way- It's a huge institution- will be interesting to see what comes- at least I have it on a voice mail message too!!! [Big Grin]
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Keebler
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You say: "I DO have a "positive" Elisa done at the same time."

Do try to get that copy, too.

At this point, if the PCP is a nice guy and you sense that is really honest and true, you might not want to burn your bridges.

But know that lyme patients have been dismissed from PCPs for no reason at all, if their clinic just does not want them - even if they are not being treated there for lyme.

While it's clear that he's not able (or willing?) to really learn about lyme and TBD, he may still be able to work with you for routine tests (not lyme tests) while you work with a LLMD.

If you just stay low key, never mention lyme to anyone on his staff, never as the receptionist or nurse asks the reason for that day's visit . . .

. . . keep it out of your file, etc. he still may be able to help in some ways.

And he may learn more in the process.

Fly Me to the Moon is whirling around in my head so I think I mean to end with: stay under the radar. Do not share the name of the LLMD or even the town, etc.

Be honest, of course, and ask him if he'd be able to help you with basic monitoring tests or basic questions as you pursue treatment with someone who has more experience with tick-borne illness.

Instead of saying the IDSA is just flat out wrong about so much of this, you can say "this is just so very complex and there are other doctors who have given this a lot of study."

"So Very Complex" is a very good segue that I've used often to shift gears.

Assure him that you will not pressure him to go outside of his area, that you understand his situation and his thoughts on this but you need to explore it further.

You might ask (after you get established with your LLMD) if your PCP would like a particular article or the ILADS website? Do not push it.

These usually just get stuffed into the patient's file and are not read.

(my words are not the best choice here but I hope you get the feeling of it).

Do not ask this in the presence of another staff person.

OTHER TBD (tick-borne disease) tests might be possible through his office and through your insurance, though. They, too, should be done by specialty labs under specific measures if at all possible.

LIVER FUNCTION tests during treatment, etc.

The LLMD I hope you can find can guide you on that.

Do not mention your PCP in relation to lyme, or your LLMD when you are out in public. You never know who can hear.

Even be careful around those you know (as they might repeat what you say), but most especially in public.

Your future LLMD &/or your area lyme support groups may be able to lead you to a lyme-friendly PCP.

Good luck.
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Keebler
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Is this by chance, Kaiser?
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Lunaangel
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Thanks Keebler- great advice-
I already found another Dr. I am working with and I am currently in the process of looking at another. I will not work with this institution again, as I have not been able to get any help from Dr.s there. The patient advocate was the great guy.... I will heed all of your advice with other Dr. etc... and I am very cautious- yes, you don't know who you can trust. ;( Especially in the south. I am printing off all treatment protocols now to have in hand to take. I have them on my computer for myself-but gearing up with advice from the "elders". [Wink] Yes, re: STARI there isn't a test for STARI yet - contrary to popular belief....

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Lunaangel
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I don't know if I can state the name on the site... I would rather be safe- I will pm you-
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Keebler
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You saw my "STARI" post - I deleted it right after posted when I saw that you did have a positive ELISA so thought a STARI search (ha,ha) might just be redundant.
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My eyes are all twitchy now and I can't read your last post --- but I think I see you writing that you are printing off lyme protocols to give your PCP ??? !!!

I've done that with huge failures - some doctors would not even take the ILADS guidelines from my hands. Another tossed it in the trash basket, while telling me it's all psychological and there is no lyme in my state.

Really, save yourself the bother. Don't do it. He is not in the position, does not have the knowledge or experience to help you.

This cannot be done like a recipe. You need the study, the experience and the gathered wisdom of a LLMD for an individualized treatment plan.

If your PCP's office will not give you the copy of your tests, they still insist the positive ELISA means nothing, put your energy into finding a LLMD.

If you think your PCP is open at all, just give him a piece of paper with ILADS' website link on it. Make sure that is not just stuck inside your chart.
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Lunaangel
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It's a friend of a friend that can help me now- not permanently- but, is ready, willing and able- and who gave me the doxy I am on now for only 3 weeks when I couldn't get it from anyone else in NC.

I am not with that office anymore- no worries- just wanted my test results....and knew it was the controversy, and knew it had to be positive.

Thanks again- will do-

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