Re: Got a call to go get another test done_LYME

[Guest guest]

Hi Valarie,

Since you seems to be the " Lyme resident expert " here, I also did a Lyme Western

Blot testing which they said was " negative " .

BTW, this was ARUP Igg/Igm Borrelia burgdorferi AB by WB, but this lab is using

the CDC criteria for positive (for IgM, positive result reported when any 2 or

more bands are present: 23, 39 or 41kDa) here:

http://www.aruplab.com/guides/ug/tests/0050254.jsp

And my doctor is NOT and LLMD, so do you know if these results are relevant or I

need to go to an LLMD for an IgeneX type result?

Thank you for your reply.

tiu

>

> Stacey, what Lyme tests? Most docs don't have a clue how/what to test and

> how to interpret. The fact that you don't make antibodies makes most Lyme

> tests even less likely to be correct. Mine was diagnosed by DNA in urine.

>

>

>

> Val

[Guest guest]

Hi Valarie,

Since you seems to be the " Lyme resident expert " here, I also did a Lyme Western

Blot testing which they said was " negative " .

BTW, this was ARUP Igg/Igm Borrelia burgdorferi AB by WB, but this lab is using

the CDC criteria for positive (for IgM, positive result reported when any 2 or

more bands are present: 23, 39 or 41kDa) here:

http://www.aruplab.com/guides/ug/tests/0050254.jsp

And my doctor is NOT and LLMD, so do you know if these results are relevant or I

need to go to an LLMD for an IgeneX type result?

Thank you for your reply.

tiu

>

> Stacey, what Lyme tests? Most docs don't have a clue how/what to test and

> how to interpret. The fact that you don't make antibodies makes most Lyme

> tests even less likely to be correct. Mine was diagnosed by DNA in urine.

>

>

>

> Val

[Guest guest]

On May 18, 2012, at 1:58 PM, lvasiliu@... wrote: Hi Valarie, Since you seems to be the "Lyme resident expert" here, I also did a Lyme Western Blot testing which they said was "negative". BTW, this was ARUP Igg/Igm Borrelia burgdorferi AB by WB, but this lab is using the CDC criteria for positive (for IgM, positive result reported when any 2 or more bands are present: 23, 39 or 41kDa) here: http://www.aruplab.com/guides/ug/tests/0050254.jsp And my doctor is NOT and LLMD, so do you know if these results are relevant or I need to go to an LLMD for an IgeneX type result? Thank you for your reply. tiu > > Stacey, what Lyme tests? Most docs don't have a clue how/what to test and > how to interpret. The fact that you don't make antibodies makes most Lyme > tests even less likely to be correct. Mine was diagnosed by DNA in urine. > > > > Val

[Guest guest]

On May 18, 2012, at 1:58 PM, lvasiliu@... wrote: Hi Valarie, Since you seems to be the "Lyme resident expert" here, I also did a Lyme Western Blot testing which they said was "negative". BTW, this was ARUP Igg/Igm Borrelia burgdorferi AB by WB, but this lab is using the CDC criteria for positive (for IgM, positive result reported when any 2 or more bands are present: 23, 39 or 41kDa) here: http://www.aruplab.com/guides/ug/tests/0050254.jsp And my doctor is NOT and LLMD, so do you know if these results are relevant or I need to go to an LLMD for an IgeneX type result? Thank you for your reply. tiu > > Stacey, what Lyme tests? Most docs don't have a clue how/what to test and > how to interpret. The fact that you don't make antibodies makes most Lyme > tests even less likely to be correct. Mine was diagnosed by DNA in urine. > > > > Val

[Guest guest]

CDC says its testing protocol should not be used for diagnosis. Sounds like your testing was from LabCorp or Quest. Both leave off two important Lyme bands and both require five bands. It says, " Per CDC guidelines, if ELISA test result is NEGATIVE, Western blot should not be performed. " That is pretty disgusting given the ELISA has a 50% error rate, not much better than flipping a coin. Lyme is a clinical diagnosis, made by an LLMD. Testing at a good lab (www.igenex.com) can be confirmatory but false negatives are still a problem. You will not get proper testing or treatment from a regular doc. My WB was " IND. " I had a positive band 41 and several " IND. " Thank God, my doc considers even one positive band suspicious. I joined this group in 2005 and would have checked out by 2009 without the intervention. What else do you remember? Bulls eye rash? Sudden flu? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lvasiliu@...Hi Valarie,Since you seems to be the " Lyme resident expert " here, I also did a Lyme Western Blot testing which they said was " negative " .BTW, this was ARUP Igg/Igm Borrelia burgdorferi AB by WB, but this lab is using the CDC criteria for positive (for IgM, positive result reported when any 2 or more bands are present: 23, 39 or 41kDa) here:http://www.aruplab.com/guides/ug/tests/0050254.jspAnd my doctor is NOT and LLMD, so do you know if these results are relevant or I need to go to an LLMD for an IgeneX type result?Thank you for your reply.tiu>> Stacey, what Lyme tests? Most docs don't have a clue how/what to test and> how to interpret. The fact that you don't make antibodies makes most Lyme> tests even less likely to be correct. Mine was diagnosed by DNA in urine. > > > Val

[Guest guest]

Yes, my ELISA was negative so the WB was not done.

I wonder if I can get anyone to look into it further now that they know I do not

make antibodies like normal. I had the flu at the time that I hit my head.

That was one month before the 24/7 headache started. I am on a website for new

daily persistent headache and many were found to have Lyme. I remember the flu

because I was so sick, came down to play cards and stood to deal, my 2 year old

pulled my chair out and that is how I hit my head. No bullseye rash so that is

why no docs take it seriously.

> >

> > Stacey, what Lyme tests? Most docs don't have a clue how/what to test and

> > how to interpret. The fact that you don't make antibodies makes most Lyme

> > tests even less likely to be correct. Mine was diagnosed by DNA in urine.

> >

> >

> > Val

>

[Guest guest]

Yes, I know IgeneX is expensive and most insurance will not cover it.

But it is probably worth the money if you indeed have Lyme.

From what I read even Western Blot is not accurate if using CDC guidelines (5

bands out of 10 or 2 out of 3 for late stage). And the results HAVE to be

interpreted by an LLMD otherwise it's useless.

My regular doctor just said NEGATIVE and no bands discussion so surely no clue

about Lyme

>

>

>

>  Most insurance will not pay for the igenex testing. I looked and it is over

$500 for all of it. It was more expensive than the other labs, but if you want

the right testing done. Plan on close to a grand if you want some kind of DNA

testing done.

>  

[Guest guest]

Yeap, I've just checked my lab results and the test was an ELISA Igg/IgM Ab for

Lyme (which you saying is wildly inaccurate)

And I did had a presumably flu/viral illness prior to this but not rash that I

can remember.

Thank you for your reply.

>

> CDC says its testing protocol should not be used for diagnosis. Sounds like

> your testing was from LabCorp or Quest. Both leave off two important Lyme

> bands and both require five bands. It says, " Per CDC guidelines, if ELISA

> test result is NEGATIVE, Western blot should not be performed. " That is

> pretty disgusting given the ELISA has a 50% error rate, not much better than

> flipping a coin. Lyme is a clinical diagnosis, made by an LLMD. Testing at

> a good lab (www.igenex.com) can be confirmatory but false negatives are

> still a problem. You will not get proper testing or treatment from a

> regular doc. My WB was " IND. " I had a positive band 41 and several " IND. "

> Thank God, my doc considers even one positive band suspicious. I joined

> this group in 2005 and would have checked out by 2009 without the

> intervention. What else do you remember? Bulls eye rash? Sudden flu?

>

> Val

[Guest guest]

Worth it only if you find a doc to treat it. Just like it might be worth it to have a full body cat scan, or BRCA testing, or genetic testing, or a sleep study (which every single one of us with HTN should really have anyway) etc that could tell us something exists we didn't know about.......but money is the master. Universal health care isn't going to cover things like that either sadly. So if I, and many like me, had chronic lyme it doesn't matter right now. I'd like to be 100% well and I AM absolutely eating healthy and exercising as much as the anemia is letting me, and I do it even though I can get pretty winded right now. But if I had Lyme and that was the clincher to get over the hump, the cost is so prohibitive as would be the treatment (I'd have to find a doc who'd order it and treat it and that hasn't gone well so far already) that I am just out here floating (that still doesn't mean I'd have

lyme because I haven't been tested - though I have had the rash which WAS classic in appearance.)

But as for me I can barely find gas money to go to church on Sundays or get the kids to school since my collapse of 2009/2010. Lost almost everything as it, the hypokalemia and Conn's and hyperthyroidism, just worsened and compounded over the years til it got me mentally and physically and it finally hit the proverbial fan - mostly due to misdiagnosis after misdiagnosis and due to the same medical system I have been a part of my whole life.

Yeah, there's some bitterness still and THATS not healthy I know....but I need to vent some as I had to sell of all my drumsets to survive (I had 3 of them when this started and was my outlet since I was 14). But it's been the hardest pill to swallow. I am not disabled, and I won't be, and I am willing to do anything work wise, but I had been a health care worker now for 26 years and no one else seems to want a cast off - even the gas station, when she saw my masters degree, said no. Maybe someday the board will let me have my license back or I'll write that blockbuster since I am so long-winded.

Ugh.....

Do you have a history of a tick bite and rash or are in an endmeic area for ticks? Or are you just ruling out things to make sure? Lets pray that if you do you can get it fixed. It changed Vals life she said once they got down to business.

From: lvasiliu@... <lvasiliu@...>Subject: Re: Got a call to go get another test done_LYMEhyperaldosteronism Date: Friday, May 18, 2012, 10:51 PM

Yes, I know IgeneX is expensive and most insurance will not cover it.But it is probably worth the money if you indeed have Lyme.From what I read even Western Blot is not accurate if using CDC guidelines (5 bands out of 10 or 2 out of 3 for late stage). And the results HAVE to be interpreted by an LLMD otherwise it's useless.My regular doctor just said NEGATIVE and no bands discussion so surely no clue about Lyme>> > > Â Most insurance will not pay for the igenex testing. I looked and it is over $500 for all of it. It was more expensive than the other labs, but if you want the right testing done. Plan on close to a

grand if you want some kind of DNA testing done.> Â