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» LymeNet Flash » Questions and Discussion » Medical Questions » How did you FINALLY get a positive test?

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Author Topic: How did you FINALLY get a positive test?
joahsark
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Very strong clinical diagnosis,just about every symptom,especially severe encephalitis, body weakness and pain and heart irregularities.

Grew up in Pa with history of multiple tick bites, sick many years, been treating a year with an ILADS LLND who has told me she "would bet her life" on the fact I've got Lyme, bartonella and prob babs, and that I'm in desperate need of IV. I herx very stongly to abx, and have a young daughter who has a positive elisa and is sick.

Doc now suddenly says due to "investigation" of some sort she can no longer treat without the "proof" of positive tests. My most current WB has IGM-41+++, 39 IND, the IGG has 41+++, my previous WB has IGG 34IND, 41+++ and IGM 41IND.
These are from Igenex.

How long and what meds got you a positive test? I'm currently on zith and Rifampin, doc ordered one more labcorp blood draw in four weeks, if that's negative I'm kicked to the curb. Highly doubt Labcorp will find anything. I'm left to find a doc who will treat clinically.
In shock and don't know where to turn.

Thanks everyone.

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Keebler
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The new ADVANCED LABS CULTURE test is the best way to go but it's very expensive.

Details 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)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back are discussed here.

==================

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.
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Lymetoo
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Never had a positive test. I'm an imposter!! [Big Grin]

Was successfully treated nonetheless.

Hope you can find an LLMD with guts.

PS .. take a tetracycline or doxy for 3-4 wks then go off 10-14 days .. then retest THRU IGENEX LAB.

From DR C's Western Blot Explanation:

"Giving patients 4 weeks of antibiotics (usually tetracycline, 500 mg, 3 times a day), will convert a negative or equivocal Western blot to positive in about 36% of cases."

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

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Keebler
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Have you considered a RIFE MACHINE ?


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

Topic: RIFE Machine - Reference LINKS
-

[ 06-07-2012, 02:35 AM: Message edited by: Keebler ]

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Lymetoo
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www.igenex.com

Test #188 and 189

costs around $200

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

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Keebler
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Then what, though?

A MD will likely also insist on a positive lumbar puncture and ELISA (according to the two tier IDSA rules). As you likely know, lumbar puncture is NOT a good test for lyme but the IDSA ID doctors still insist upon it for a diagnosis. ELISA is not, either.

An IDSA ID doctor would likely ignore a IgM Western Blot, too. They'd want the IgG positive, but, again, would also demand other tests that usually fail to find lyme.

Get a LLMD on board first as they may not take even a positive test seriously and, even if IV is prescribed, 30 days is likely the max.

Vet the MD first, so you don't waist time and money on a test they won't acknowledge.

With the other tick-borne infections and your LLND's clinical diagnosis, there seems little question. I'd save the money from the test and put on treatment.

There is one (maybe more) excellent LLMD in Seattle. Of course, lack of insurance is the drawback for many.

Wish your LL ND could suggest a local MD for you who could work along with them -

Ask at your area support groups for all the options.

- after some searching I see now that you are in the Seattle area. At least you have some good choices there. If insurance is the door slammer, you might consider RIFE treatments. That has helped many in similar situations.
-

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Lymetoo
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quote:
Originally posted by joahsark:

Doc now suddenly says due to "investigation" of some sort she can no longer treat without the "proof" of positive tests.

-
I was going by this, Keebler. Was hoping this Dr would treat with a positive test.

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

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Keebler
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Oh, sorry. Good catch, TuTu

I was thinking of how a new MD would approach this. I'll leave my thoughts regarding that.

joahsark,

Wonder if you can find out what "proof" that doctor needs. If she is an member of the IDSA, then, is she going by their rules?

If so, she may not accept Igenex tests (although they are top notch).
-

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joahsark
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Thanks guys, I'm in Wa. My doc for the next thirty days (I'm cut off after that if no positive) is one of those top LLNDs in WA. Trained with absolutley the best on the east coast. I have absolutely adored her for the past year and felt lucky to be her patient. It has been the first time I've had hope in 18 years.

This new development has truly shocked me.

The WB results I posted were from Igenex. She did tell me to have my MD order the advanced lab test if the Labcorp test was negative and then come back to her.

I get the volatile and scary position our docs are in, but feel suddenly abandoned, I can't wrap my head around that a few weeks ago she told me desperately ill I am with these infections and suddenly leaves me with no treatment at all. My concern is especially for my 11 year old daughter who isn't well yet.

My current protocol is the first I've been able to get on completely due to severe herxing. Do you think there's any chance a month of the zith and rifampin might do it?

Thanks agian.

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Keebler
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"This new development has truly shocked me." (end quote)

Is that 30-day, "positive test proof requirement" for the MD treatment or for LLND treatment?

Since under a different licensing and governing board, it is my impression that NDs can treat long-term. [But that you need a MD there for the IV treatment.]

Please do not give up or despair. There are always other ways. Always.

The LLND will likely be aware of the best herbal approaches and those may work well for you. Surely, you won't be cut off from other approaches with the LLND?

She may also know about RIFE.

Still, if looking for the very best test, the ADVANCED LABS CULTURE test seems the best. But, it's $600.

Still, most MDs will not treat lyme long-term.

To be clear, your LL ND would NOT be able to treat longer - with ANY method - unless you get proof positive?

I am sorry this is so challenging. I still think there is a way this can all work out.

I assume you've talked with Dr. K's office ?
-

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Lymetoo
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quote:
Originally posted by joahsark:

Do you think there's any chance a month of the zith and rifampin might do it?


-
You mean to "cure" it or to elicit a positive test result?

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

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BoxerMom
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Sent a PM.

--------------------
 - Must...find...BRAIN!!!

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Keebler
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Oh, good. BoxerMom to the rescue. Someone who knows the neighborhood.
-

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joahsark
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BoxerMom,

Thank you so much! I PM'd you back but your box is full. I'll try to send it agian later today.

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joahsark
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Lymetoo, I was referring to getting a positive result with the zith and rifampin.

Keebler, yes, it's the LLND who will not continue treatment without some kind of positive test. Can't believe my daughters positive Elisa isn't enough. She is an ILADS, well known doc, that's why I'm so shocked. She did say she would be able to go on with ANY positive test meaning any of the co-infections or Lyme but I just can't seem to get that.

Unless there is some miracle with labcorp at the end of the month I will invest in the Advanced Lab test, it must be ordered by an MD, so I will ask the Lyme Literate Psychiatrist (who I was referred to by the LLND for pain and anxiety since she can't order meds for either of those here in Wa) to order it for me, also the LLND says she's positive a spect scan would help too since my brain inflammation is so severe, brain MRI's have failed to really show significant findings.

I can't tell you how much I appreciate you guys for taking the time to respond, You read about this kind of thing happening to Lyme patients but definitely don't grasp it until it's your reality.

Sending you guys all the best.

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BoxerMom
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I cleaned out my mailbox.

--------------------
 - Must...find...BRAIN!!!

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debilyn
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I think you have to be off all abx for 4 weeks prior to taking the Advanced Labs test. You can double check this at their website.

Also, they say to do the blood draw for the Advanced Labs culture early in the afternoon because the pathogens are more active.

When I did the test, I had not yet been on abx; I was operating under a FM/lupus dx. Also, I was in a pretty brutal flare when I had the blood drawn.

My positive results were back in two weeks. Sometimes it takes up to ten weeks to get the results because Bb grows so slowly.

These are some things to consider. You will find the right way to go; just keep going forward.

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Robin123
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Except for the surety of the new Advanced Lab culture test, it is NOT Lyme-literate to insist upon a positive test for the rest of the Lyme tests. Many people do not test positive on the other tests even though they may have the illness.

See www.canlyme.com/seronegreasons.html for the reasons why.

Some of the most ill patients do not test positive, and after they are treated some, are strong enough to mount an antibody defense and show up positive.

That's why I am surmising this doctor is experiencing some political backlash pressure of some kind and that's what's behind her insistence on the need for a positive test.

Once again, except for the new culture test, Lyme-literate doctors know better - they know we don't always test positive even though we're ill, and they treat clinically, based on history and symptoms.

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BoxerMom
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Her doctor knows all of this - backward and forward. As does joahsark.

The doc is being investigated and is nervous about losing her license. She wants positive labs to justify treatment, if it comes down to that.

Many of our LL docs are under investigation. It's not that they don't understand the testing issues or the clinical diagnoses. They are trying to save their practices.

joahsark is looking for strategies - abx or herbal - full moon - week before your period - when you're flaring - whatever - to get a positive test result.

And some comfort to help her through this bump in the road.

--------------------
 - Must...find...BRAIN!!!

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Keebler
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I'm sorry to hear that the "investigations" have moved to the LL NDs, too. I had thought the different licensing and governing boards than those for MDs provided some wise flexibility.

Also considering that Bastyr University is in WA - perhaps THE most prestigious naturopathic college in the country - I would have hoped that might have some supportive effect for the LL NDs in that state and the NW region.

My wish is for the very best turn around for this very soon. In the meantime, nurture and nourish and just, generally: tender loving care.
-

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joahsark
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Boxermom, thank you, could never have said it better myself.

Thank you all for your input and suggestions, I will use them all in my battle for continued treatment.

As been said a thousand times, you all are absolutely invaluable to so many.

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FamilyFive
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lots of great info on here. I had a hard to diagnose case. I never got a positive on any blood test.

I got strong positives on IGenex Lyme Dot Blot/LDA (Lyme Dot Assay) and fluid drawn from my knee (both my knees are very swollen).

With the LDA I had to take 5 days of abx and did urine samples every other day (3 total). 2 of the 3 samples were positive. (Pieces of the lyme bacteria are excreted thru urine) And I went to an orthopedic dr to have the knee fluid drawn.

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FamilyFive

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Lymetoo
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quote:
Originally posted by joahsark:
Lymetoo, I was referring to getting a positive result with the zith and rifampin.


-I don't think so. I would do tetracyclines or doxy.

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Opinions, not medical advice!

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Allie
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While you are looking for *any* positive test, be sure to add in rocky mountain spotted fever - you can do it through labcorp/quest (but don't know how reliable they are).

Good luck!
Allie

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Keebler
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Cpn or Mycoplasma might also work. Treatment for those can mirror (or sort of walk beside) that for borrelia and may not be as "controversial".
-

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joahsark
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I've made a list of all the additional tests suggested by everyone here and will request them if these next ones are still negative.

Thank you all so much!!!

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AuntyLynn
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Joahsark -

Advanced Labs DOES require that you are OFF of antibiotics for four weeks before the test.

On the other hand, my Mom tested positive for Bb by Spinal Tap 3 years ago, and like you, she had lived with Lyme for at least 15 years!

Her neurologist told me that "once Lyme is in your system for a while, it most likely won't show up in a blood test as readily as in your spinal fluid, because it gets everything it needs in the spinal fluid, and tends to migrate there."

Which is why my Mom's symptoms were 85% neurological.

I was reticent to put her through it, but my sister took her, and Mom came through the tap with flying colors. (They went for ice cream right afterwards!) And the test was POSITIVE as ALL GET OUT! Even the Neuro was shocked, as she said that in her 20 year practice, she had only tested one other patient, and the CSF was not "definitive" but she treated him for Lyme anyway, because of his symptoms.

The Advanced Lab test is a "culture" test, that tries to grow Bb from eggs in your blood... if you're lucky enough to get one or two in the sample. It costs just under $600, but for my purposes (which include legal issues) it would be very hard to deny a positive, as they send you a photo of the bugs that they have grown from your blood sample!

So ... for whatever that might be worth to you.

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Lymetoo
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That was pretty "lucky", Aunty Lynn. The spinal tap has about a 20% chance of showing positive for Lyme. Many ducks use it to "prove" to a patient they DON'T HAVE IT.

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

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Keebler
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Rarely will a spinal tap (lumbar puncture) show borrelia. IF it does, great - but that is very rare indeed and it's never a good test for lyme or one to trust if negative.

A negative test can never be trusted as it does not guarantee absence of lyme at all.

It's like fishing. If you catch a fish in the river, you know there are fish there but if you don't catch a fish, that does not at all guarantee their absence.

Most doctors do not know that, however.

Most LLMDs are well aware of the severe limitations of that test.

If that test is negative (which is usually the case), then all other future tests that may be positive are never regarded by most doctors.

Often, those who have spinal taps are not able to go for ice cream later - and they are instructed to lie flat for quite some time in order to avoid migraines which can be very severe, indeed.

Sometimes - and not all that uncommon - it can take a week or two of recovery. Some fly through but that is certainly not always the case.

It's very expensive, potentially dangerous, can be painful and not a good bet. Far better tests exist that are less painful, and even less expensive (but, of course insurance won't cover those).
-

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Lymetoo
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Like minds post at the same time. [Wink]

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--Lymetutu--
Opinions, not medical advice!

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Keebler
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A wink and a sunny smile to you, too. Oy, vey, eh? - just trying to keep everyone safe and fully informed.
-

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lpkayak
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LUAT

--------------------
Lyme? Its complicated. Educate yourself.

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joahsark
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Thank you for the info on the spinal type, unfortunately I had two of those done years ago when I was still on my quest for a diagnosis.

One of them was one of the worst experiences of my life. I stopped counting after 10 tries to get the needle in the correct spot in my spine, they finally called an anesthesiologist down and got it done but on top of my never ending head pain the headache that was caused by that was completely unexplainable (and I'm used to severe head pain), went back to the hospital doubled over, screaming inside my head, and crying, they did a blood patch, no help.

I would never do another one unless my literal life depended on it. I'm thankful it's not reliable for Lyme, never want to go through it again.

I do appreciate the info so much though, and like I said, I'm keeping everyone's suggestions in case the Labcorp and the advanced labs tests don't work.

You are all the best!

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joahsark
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So as predicted, the labcorp tests for both my daughter and myself came back negative.

The doc did say her cd8-cd57 percentage ratio (?) was very low (1.8) which showed her immune system was struggling. She says she completely believes it's lyme and co-infect. but can't "prove" it and needs to for her practice at this time.

So off abx again for 4 weeks to hopefully get the Advanced Lab Test.

Just read about the Galaxy Bartonella test where they do a blood draw mon, wed and fri and test all three. Interesting, says that in the case of a positive testing patient, they nave NEVER had them be positive all three times, reinforcing the fact that you have to get the blood at exactly the right time.

Do you guys think it's a better bet for the Bart test or the Advanced Lyme test to get a positive?

Just making sure, I can still take my Bolouke, natto and serrapeptase, correct?

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poppy
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Amazing how things turn up on lymenet just at the moment you need them. For a friend of a friend.
Thanks lymenet.

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