Re: labs for lyme testing...some suggestions

[Guest guest]

But it is a clinical diagnosis since tests are not definitive.

Have to find a knowledgeable LLMD and trust him/her to interpret these tests

Ann

-- [ ] labs for lyme testing...some suggestions

I am not a medical person and " just " learning and passing what I learned.

There is not just one lab nor just " one test " . There are a few. I am going

to post the tests that were suggested to me by a friend. She was a

laboratory professor and mensa. She now has lyme. Is there someone out there

who can put a " name " to the tests if I list what was tested? It was hard

finding a practitioner to do all or most of the tests. This is extremely

frustrating because of false positives. MDL and Igenex were suggested to do

specific " lyme " testing. Igenex came back with one positive band and MDL

came back with no positive bands. The reverse can happen. CDC says you

needs a certain number of bands to be given Lyme or chronic lyme diagnosis.

Dr. Burrascano says otherwise. His link is below. I pulled out all my

daughters blood work, put it on excel and saw the one band Dr. Burrascano

says suggests lyme is the band my daughter has. And, she is symptomatic from

just the one band.

http://www.ilads.org/files/burrascano_0905.pdf

I'll list the tests but we really need someone who can tell us the " name or

code " of the test to request. I say this because I went to lyme literate

doctors and each one who knew what test to order knew how to order. They

were all knowledgeable in their own way but no " one " doctor ordered the

list of tests my friend suggested. So it has been hard putting things

together. My family kept insisting I go to infectious disease specialists

but my friend said " no " unless " lyme literate " . We went to so many doctors

till we got some help.

Here are the suggested tests (there is a site that lists all labs but I have

to find it)

1. cd 57 from labcorp

2. bands of dna for borella -bands 23,25,30,31,39 41

***We had MDL and Igenex do this test. One lab came back positive one lab

came back negative. The tests were done within a few months of each other.

Igenex came back postive but I was told it can be the reverse. just " our "

experience. Both are good labs

3..chlamydia pneumoniae from labcorp-be sure to get igg and igm

see Vanderbuilt Straton Protocol-I was told to mention this but I did not

look iresearch it.

****one lab calls it something else so not to be confused with the chlamydia

std.

4. mycoplasma pneumoniae by MDL or Igenix. test for IGG and IGM.

A doctor used bioreference laboratories and it was picked up as being

exposed not active. The IGG and IGM would let one know if active or exposed.

***one lab used came back negative, one lab used came back positive.

5.mycoplasma fermentan incognitos strain not the panel, not the kit. " the

strain " . Igenex or MDL was suggested. not sure if this was done or not.

6.western blot by Igenex. Is this the band test in test 2???? fyi....Before

doing the western blot at igenex it was done at a local lab and it came back

neg at local lab.

7.. herpes viruses 1-8 through labcorp. Bioreference labs picked up things

local lab did not. fyi...The blood used for Bioreference was also used for

MDL.

8.bartonella and babesia blood smear with photo from fry labs. test number

88342. I called the lab and gave my daughter's zip code to see who in her

area has done this test since my friend said this is an important test.

Bartonella and Babesia were tested at other labs but my friend felt stongly

about getting Fry to test it. We did this once the DNA band from Igenex came

back positive. The test was first taken yesterday.

9. In my notes I have Lyme assay from Igenex or MDL. I'm not sure if that is

part of any of the above tests or not. And, I'm not sure if it was done.

This is all new to me too.

10. Because of my daughter's symptoms the lyme literate doctor I took my

daughter to used an Ansar test and discovered my daughter has something

called POTS. Her blood pressure is low and goes lower what laying down then

stands. The Ansar test is less invasive than tilt table testing. To find a

pracitioner, if need be, call the company at 888 883-7804 www.ans-hrv.com

(I did not know my daughter had lyme at the time....I have CFS for 24 years

so I was looking for a CFS literate doctor and I happened to find him...I'm

going to get tested once my daughter is where she needs to be. (heat is her

worst problem...she gets faint)

11. my daughter's DHEA, cortisol, testosterone levels were tested.

Fortunately the lyme literate doc knew to do these tests. My daughter had

extremely low DHEA and testosterone levels so a RX cream was compounded. It

was compounded in about February and is still being fine tuned.. The person

by daughter saw yesterday thinks the cream might be causing the extreme

sensitivity to the sun so I'm not sure what is going to be done next. The

person who saw my daughter yesterday will thankfully work with the doctor my

daughter is seeing. Only problem is the doctor is about 1 hour away and

difficult for my daughter to get to but that is another side problem. (Her

and I live in different states).

Another problem...insurance is not accepted. Very very hard situation.

Hopefully we will get reimbursement whe nwe file.

12. since hormones involved, adrenocortex stress profile saliva by genova

labs was done last week.. Is this the best lab???? The original test done in

February was a blood test. Both ordered by same doctor.

13. a non lyme literate doctor close to my daughter had my daughter see an

endocrinologist who did a cortisol stimulation test by Quest. This came back

negative but saliva test showed out of ranges. Another reason why lyme

literate doc needed, And...sorry to say not all who say they are lyme

literate are really lyme literate.....in my opinion. My advise...ask how

they test babesia...if mention fry labs, probably who I would suggest. ..

from my experience. It took me 10 years to get a CFS diagnosis and now that

might be wrong,,I do not want my 24 year old daughter to go through what I

did so I'm being as thorough as I can,,,,,and it is not easy......my doctor

at the time had to tell me to consider disability cause I was trying to

overcome what I just could not. Lucky for me... I listened, I only had 30

days left until my eligibility ran out. I kept trying to work for 10 years..

If I had applied years rearlier I would have been in a much better

situation, I waited too long.

Still learning and gathering..... one day at a time....