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» LymeNet Flash » Questions and Discussion » Medical Questions » Test Accuracy & First LLMD Questions

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Author Topic: Test Accuracy & First LLMD Questions
ThatDarnTick
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I saw an LLMD yesterday for the first time. I am trying not to be disappointed, but it's a four hour drive there (and another four hours back) and my appointment lasted all of ten minutes...if that. I wasn't examined, just asked a few questions and was put on oral 500 mg Amoxicillin 4 times a day and given an IgeneX urine collection kit.

I had the EM rash years ago and have nearly every symptom on the Burrascano list, but especially have severe neurological problems, exhaustion, and can barely walk.

The doctor said I might not have Lyme Disease and that is why he's running the urine test.

I've used the search function, but can't find the answers, so forgive me for asking things people have probably already asked. I'm quite easily confused lately as well. [Frown]

How accurate is the urine test? I have to borrow the $210 for it, so is it really worth the money?

I thought having the EM rash indicated I have Lyme Disease? If I could possibly not have Lyme Disease, should I follow through and see the rhuematologist my primary care physician recommended in addition to the LLMD? (I self-referred to the LLMD.)


How effective is the oral Amoxicillin in treating long-term, severe neuro Lyme Disease?

Thank you to anyone who replies. I really appreciate it.

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Keebler
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-
Igenex urine test is one of the better ones, still, no test can guarantee the absence of lyme.

Any test can result in a false negative. Most tests can miss detection. Although Igenex is one of the best labs there is. Was that particular lab his idea or yours?

How many pills is your prescription? How many days will that cover? Is it renewalable, check the front of the bottle, it will say if there are refills.

But, no, this one abx would not be enough in any case. Combination treatment is absolutely required.

Did he instruct you how to take (or not take) the abx before that test. It really matters on the outcome to be precise about that for the best results.

Most first appointments are an hour to many hours in time.

I wonder if you were charged a full amount?

Might there have been some emergency to cut your appt. so short?

Is he covered by insurance? If so, that could explain a lot and he is likely not a LLMD.

* Is this doctor an ILADS member?

Where did you get the referral? You say you self-referred to this doctor. How did you determine his experitise? How did you research him?


While most non-LL doctors will not use Igenex lab, I highly doubt this doctor is a real LLMD because a real LLMD would know that lyme is a clinical diagnosis, requiring a clinical assessment and that tests are just part of the exploratory process.

True, they like to have some tests before moving forward but it sounds like treament may not even be available if the tests is negative? I may be reading - or misreading - between the lines but it "sounds" like that. Was that clear - or did he just say he needed the test before doing a clinical exam?

Would your real first exam be after test results are in?

Did you complete a long questionairre with history and symptoms?

Did he do any kind of physical exam? Test how you walk, check your balance & neuro functions? Sounds like none of that was done as you say he did not examine you. Did he at least watch how you walk? That is a key point for all LLMDs with every new patient, to watch them walk.

Any mention of other tick-borne infections

What if the test comes back negative? What then? Did he say?
-

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Keebler
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You asked: "should I follow through and see the rhuematologist my primary care physician recommended?" (end quote)

No. No. No.

Not with your history. Not with your current symtpoms. Just, no.
-

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Keebler
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You say that you are "trying not to be disappointed" [in both the short appointment and apparent or possible dismissal before you even get started]. (end quote and paraphrase).

Hey, you have every right to be disappointed. You were slighted (regarding the manner a typical LLMD would conduct business). No doubt about that at all. Your experience is not at all typical of an ILADS educated LLMD.

One explanation for if this is one, though, is that the IDSA is putting undue pressure on all LLMDs and some have to sharply change how they go about their practice.

Not sure how all this will work out, but, remember there is always another way. Remember that. Always other ways.

You ask about borrowing the money for the test. I would not - unless you were assured that a real ILADS educated LLMD or LL ND would do a full assessment for whatever might be going on and take into account the past EM and your symptoms.

If not, I would not borrow the money for a test that could just you in debt with no doctor, anyway if it comes back negative.

Also, how long would he treat with a positive test? Would he treat without a positive test? Would it be a combination approach?

How long are his other appointments? If less than an hour for the first one (or first several), he can't do a proper job for someone with lyme.

Again, always another way. Hold on.
-

[ 07-13-2013, 08:18 PM: Message edited by: Keebler ]

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lax mom
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He sounds similar to my son's DAN Dr. He was listed on the ILADS list because he went to one conference. He is NOT an LLMD and doesn't like treating Lyme.

I have a feeling that your Dr is not an LLMD. I'm sorry you had to drive 8 hrs total for a 10 minute appt.

I had a similar experience with my Neurologist. I drove 2 hrs there and 2 hrs back and he was in and out of the room so fast, I don't even think he asked me why I was there.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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poppy
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If you have had lyme a long time and you can't pay for a test, how do you plan to pay for treatment, which may go on quite a while?

Doctors do not often put new patients on heavy duty treatment on the first appointment.

How did you get the name of this doctor? Generally it is a good idea to talk to support groups about docs to get some idea of how they operate, what experiences people have had.

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Lymetoo
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Be sure to connect with an LLMD who has been recommended by patients who have gotten WELL with said Dr.

This Dr does not sound like the total package.

-

Yes, the EM rash means Lyme.

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

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TF
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That doctor only put you on the amoxicillin as part of the urine test. He is waiting for the results of the test before he treats you for lyme.

So, he didn't give you lyme treatment. He just gave you enough antibiotics to do the antibiotic challenge test as it is called.

The way it works is that once you take the amoxi, if you have lyme, the amoxi will kill some of it and some of the dead lyme will show up in your urine.

A doctor who is worried about being hauled up on charges for treating lyme patients would likely behave like this doctor. He wants some proof to point to if he is going to treat you for lyme.

So, just know that a doctor like that is putting himself first. I don't blame him; he doesn't want to lose his license to practice medicine. But, this is not the best situation for you.

You are better off finding a doctor who is not afraid and who will treat you for lyme disease to see if you respond to it, meaning that you herx or get better or both.

Amoxi treats lyme but the dosage has to be at least double what the doc gave you, plus you have to be given probinecid with it and then eventually a cyst buster like flagyl has to be added.

Here is Burrascano's guideline on treating with amoxi:

*Amoxicillin- Adults: 1g q8h plus probenecid 500mg q8h; doses up to 6 grams daily are often needed (page 17)

In English, this says: 1 gram (1,000 mg) every 8 hours plus probenecid 500 mg every 8 hours; doses up to 6 grams (6,000 mg) daily are often needed.

I was put on 1,500 mg every 8 hours for a total of 4,500 mg per day (4.5 grams). That plus probenecid and flagyl is how I got rid of lyme disease over 8 years ago now.

So, now you know why he didn't spend time with you, didn't examine you, etc. For him, he is going by the test alone to decide whether or not he is going to treat you.

Find a doctor who does not treat based on test results and get yourself some treatment. I wouldn't go into debt for this test for this doctor. Use the money toward the first appointment with a lyme doctor with courage.

I can give you some names. I guarantee you will be with the doctor for at least an hour, they will want to hear your history and all your symptoms, and you will most likely be offered treatment based on that alone, no tests required.

Regarding the EM being proof of lyme disease, that is true but often doctors want to see the rash for themselves or a picture of it. Some people may have a dime-size red spot from irritation of an insect bite and say that they had the bulls eye rash. Some people get very alarmed over nothing, etc. so that's why lyme doctors want to see the rash if possible.

If you describe the rash and then the symptoms that you got after that, that is how the diagnosis of lyme is made. The diagnosis is then confirmed by how you react to treatment.

"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.

Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7 of Burrascano)

I don't know how accurate the urine test is, but as you can see above, no test is accurate enough to base the lyme diagnosis on it.

I had the urine test a number of months after I completed lyme treatment. About 8 months later I was afraid I was getting lyme back, so my doc did the urine test. It didn't show any dead lyme. He told me that the symptoms I was describing didn't sound like a relapse, and the test didn't show any dead lyme in my urine. In my case, it turned out to be perimenopause.

Last year my lyme doctor told me he doesn't use the urine test anymore as there are now better tests. So, just know that you can't put your hopes on this test. Put your hopes on a great lyme doctor. That gives you the best chance of getting well.

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ThatDarnTick
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Thank you, everyone, for responding.

The Igenex lab was his idea.

I have a 30 day supply of the medication with no refills. I go back to see him in 37 days.

He didn�t give me any instructions on how to take the abx. His nurse told me to take a probiotic an hour before or an hour after. Herx was never mentioned to me by anyone at my appointment.

There was not an emergency that cut my appointment so short. I was there a while after, filling out insurance papers for his secretary, and he was just hanging around in the office.

He IS covered by my insurance. This is why I picked him�I did research him and found mixed reviews�both good and some very lukewarm, but none were bad.

He is an ILADS member. I found him off of the list I was given from here.

By �self-referred�, I meant that I didn�t have to ask my PCP for an insurance referral.

At this point, I don�t know if I�ll ever get a real exam from him. :s He looked in my ears�no neuro test, no watching me walk, no feeling my glands, no looking into my eyes�nothing except looking in my ears.

There was no mention of other tick-borne infections.

He said that if the test came back negative, he promised me he�d figure out what was wrong.

He made no mention of further treatment. I had a list of questions to ask, but I am very confused and was taken off-guard. I had planned on having my sister come with me, but we had a family emergency come up and I was forced to go alone. I will try to never go alone again, but with my situation, I�m not sure that�s possible. (My parents are both terminally ill, I have an Autistic child, and my fianc� recently died, so the only person I can depend on is my sister.)

I don�t have any way to pay for treatment. If it comes to paying for treatment, I will not receive treatment.

My EM rash was about 18 inches wide. There was no mistaking what it was. I just didn�t know about Lyme Disease back then and it was on the inside of my thigh, so I didn�t seek treatment since it didn�t hurt and I wasn�t keen on showing anyone the inside of my thigh unless I had to.

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t9im
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TDT:

Unfortunately welcome to the world of the Tick Borne Disease controversy.

How reliable are the tests? Not very, even with Igenex. Our daughter tested negative 10 times via Igenex (they are one of if not the best for TBD) but on test 9 we also ran the new Advanced Lab culture test and they grew the spirochete in less than 2 weeks (a positive test).

Not sure who your LLMD is but he didn't sound like most LLMD's or their PA's that I've heard of. They normally spend at least an hour, maybe cost has come into play.

Good luck.

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

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surprise
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Hang in there- they do have to test- and maybe your 1st appt. was cut short because the Dr. is trying to conserve your $,

and when the results come back, then more will be revealed.

Our first LLMD, I had to drive both my spectrum daughter and myself 4 hours there, and then 4 hours back, too. Brought lots of snacks, allowed for bathroom breaks,

would pour into the house into bed afterward.

Sometimes, after established, we were able to move to phone appointments every other month, instead.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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Ellen101
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Personally I would be very upset if I was in your situation as well. Chances are this doctor is billing your insurance for a bundle and spent ten minutes with you, that's disgusting! You deserve and are entitled to more. He obviously knew you traveled four hrs to see him.

Is this the only test he is doing? No bloodwork?? I can understand you wanting to go through your insurance. For many of us that is the only way to get treatment as otherwise it is unaffordable. The amounts that some of the LLMD's charge are ridiculous and some are solely in it for the money so you must be careful.

At this point if possible I would do the test as the results will be yours to keep afterwards. Be sure to get a copy. But in the meantime I would be on the lookout for someone else. I'm not sure how far you would be willing to travel, but I could refer you to someone who does accept insurance.

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poppy
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I think one appointment is too early to make any judgment on what will happen with this doctor, and lyme docs who take insurance are rare.

Also, if you told him you could not pay for treatment, that may have influenced him. Since you apparently do have insurance, some treatment may be paid for. However, a person long afflicted may need IV, which is frequently restricted by insurance companies.

In this country, people who can't pay for treatment and have nothing to sell to raise money, like house or car, cannot get longterm very expensive treatment. That goes for all serious diseases, although some low income programs like medicaid will pay better for more acknowledged diseases than orphans like lyme.

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Keebler
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-
One appointment can be too soon to judge, however, some things are red flags to me.

Find ALL the lyme support groups within a couple hundrd mile radius to that doctor. Find out what others might have experienced with him, regarding treatment comprehensiveness.

As there are doubts, and if he does not turn out the be really with ILADS, but just someone got on some list . . .

Is there anyway you could get a rife machine?

I do not think this doctor will be able to treat you. His saying "if the test came back negative, he promised me he�d figure out what was wrong." is a HUGE RED FLAG. HUGE.

Find another way. I would sell what you can to get a rife machine, read what you can about support during that. Or see if anyone in all the area lyme support groups around you might have a rife they are not using and could loan to you --

or could you go to someone's place to use the rife. For lyme, it's just every 12 days for quite a while.

Ideally, you'd get to a real LLMD. He is not, especially telling you that "if the test comes back negative . . . " and not talking about other tick-borne infections . . . . he is NOT equipted to treat you.

He may mean well and his heart may be in the right place but, based on what he says and how that first appointment went, IMO, he does not have the knowledge if he's thinking that the test must be positive and if he ignored your past obvious EM.

I know cost prevents you from finding an indepenedent LLMD or LL ND. So, I would consider rife.

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

Topic: RIFE Machine - Reference LINKS

LL Naturopathic links here, too. Articles, books and links for support methods.
-

[ 07-14-2013, 01:26 PM: Message edited by: Keebler ]

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poppy
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On what do you base your suggestion to get a rife machine? Is there some science that you know about? Does everyone with rife experience a remission? How did it work for you?
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Keebler
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No, not everyone who uses a rife achieves remission but I have talked to many who have. I've studied it in detail. I have not gotten to use rife yet.

I've talked by phone with several who have full lives back, after a long time with lyme.

The EM rash, the history, the symptoms, are certainly diagnositic for lyme.

Even just starting there with a rife has a good chance, especially if there is no way to get other treatment (if the test comes back negative, or if the doctor is not able to treat fully, and is not fully LL - and no way to afford another doctor, treatments).

Rife seems a very logical avenue to explore.
-

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Ellen101
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Any doctor who only gives you ten minutes of his time is just not worth seeing in my opinion. I went to a nutritionist yesterday who spent over an hr with me and then even emailed me late last night in response to a question I had.

There are others out there that can help and you deserve better.

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surprise
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What if you can only afford 10 minutes? At least he got antibiotics.

Seriously, the price to treat this disease is disgusting.
I could go on, I won't.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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Ellen101
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It's not a question of being able to afford a 10 minute appt in this case as the doctor billed the insurance, not the patient...chances are he billed the insurance for alot more than what a 10 minute visit would cost..
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