But take info from a web site in Holland:
http://www.rnw.nl/health/html/difficult_diagnosis.html

It states that depending on the strain, you may get different symptoms. The three most prevalent strains exhibit the following symptoms:

"In the United States, the Borrelia burgdorferi can migrate to the joints where it causes arthritic type complaints. In some cases, these symptoms can persist though out life.

In Europe, Borrelia afzelii can cause a variety of skin rashes all around the body - and not at the site of the original tick bite. These rashes can vary from skin discoloration of different shades and sizes through to lymphocytoma (a benign tumour) or acrodermatitis chronica atrophans - a discoloration/degeneration of the skin of hands and feet.

The other European variety, B. garinii can cause a whole range of aspecific complaints of the nervous system. Facial palsy - a partial paralysis of the facial muscles - can occur as can symptoms of meningitis, such as stiff neck, persistent fatigue and difficulty concentrating. A condition known as radiculitis or inflammation of the nerves causes burning pains particularly in the legs and feet of some patients.

Since I have neuroLyme symptoms, does this mean that all the money I spent on PCR test in the US, where they only test for Bbss (the north american strain), are wasted?

Have any of you guys with neuroLyme had a positive PCR test, and if so, did you also have the arthritic symptoms?

And why are the labs over here not testing for Afzelii and Garinii?

Michael

[This message has been edited by cmichaelo (edited 20 December 2004).]

from the people i have spoken too it doesn't matter, at this point, which borrelia strain you have (as there are 3 known but there could be 50).

they are testing for immunological antibodies, not the strain itself.

the problem is in that in the antibody testing the commercial tests do not sepearte the antibodies from the antigens.

borrelia is antigen binding, thus whether PCR, ELISA, WB, you are not going to get a TRUE reading no matter what.

there was some recent news out of virigina concerning the binding proteins of borrelia :
http://www.news-medical.net/?id=6871

Michael is asking about PCR testing which actually does test for DNA, not antibodies.

I have neuro lyme and joint/muscle pain/stiffness with occasional swelling.

I have tested + by the Igenex PCR serum test. I've also had on and off positives with WB's, Elisa and c6 peptide elisa tests.

I also believe that it is known that there are hundreds of strains of Bb. A study from NJ was just published where they discovered Bb mutating rapidly. The link is posted here somewhere.

I don't know what to say about whether you wasted money or not. Most of these tests are a waste of money even if you are 100% sure you have LD. It's hit or miss.

I was reading last night and the book pointed out that having a 95% chance at something means that 1 out of 20 times it's wrong. If you think about tests, 1 out of every 2 or 3 are wrong. What good is that?

I know. When I test +, I feel much better about continuing treatment and my self doubt drops a decibal. It doesn't take long for it all to come right back though. This disease seems like it's designed to make you think you're imagining your problems.

Sorry for getting so long,

More than 100 strains of Bb sensu lato exist. But that only five strains are known (so far) to be pathogenic to humans.

Amongst those five strains, the by far most prevalent in north-america and nothern europe are Bb sensu stricto, B. afzelii and B. garinii.

Labs in the US only test for Bbss in their PCR tests. They can not detect the euro strains. MDL used to have a test for the euro strains, but they don't do it anymore (or at least for the time being.)

Whether I have one or the other strain, or more than one, is quite important to me.

Also, why waste money on PCR testing in the US if the lab only looks for Bbss but I don't have arthritic symptoms?

If I have neuro symptoms only, it makes the most sense to test for that strain that may be causing it; namely garinii, according to the link in my initial posting.

Negative PCR from Igenex, but I was on ABX at the time which tends to make the test negative.

So please, everybody that has ever had a PCR test done, let us know

1) what your symptoms are (neuro, arthritic, skin, muscle, mix, other)

2) whether your PCR test [by a US lab] was positive or negative.

3) how many times you have been PCR tested.

So maybe it's time that I add myself to the pool...

Symptoms: neuro
PCR tests: negative
# of PCR tests: 3 (SB, MDL, IGenex)

If we get enough responses I'll put together a little chart to summarize the statistics. I'm thinking at least 20 replies or so.

Michael

Look at this! I had to edit this posting THREE times before I got it right. Lousy day today...

[This message has been edited by cmichaelo (edited 20 December 2004).]

[This message has been edited by cmichaelo (edited 20 December 2004).]

I tested positive for Lyme twice by PCR, once blood, and once urine. I've had numerous PCR tests. It's a standard at a particular facility where I've had IV treatment. I don't know. I'd say about ten times each, blood and urine.

I was tested through MDL. Steph

and other strains/also./

was on antibotics when tested through igenex.

also my three children/

and my husband all had positive.

quote:

---

Originally posted by DELT/3:
and other strains/also./

---

What do you mean with this?

quote:

---

Originally posted by lymealiveandkicking:
Did you have a WB.We could compare bands.I was very positive!

---

Yes I had a positive IgM by Igenex in bands 39(+), 41(+) and 66(+). The IgG was 18(+) and 41(+).

So as you can tell, I just "made it" into POSITIVE CDC status (way to go Mikey!)

Btw, the band I tested positive in are the cross-reacting bands with the two Euro strains (garinii and afzelii).

So this is another reason why I'm almost certain that I'm infected by a Euro bugger.

Negative ELISA, a few bands on WB and a positive Blood PCR from Igenex and a positive Urine PCR from Igenex as well.

I agree with this:

"I know. When I test +, I feel much better about continuing treatment and my self doubt drops a decibal. It doesn't take long for it all to come right back though. This disease seems like it's designed to make you think you're imagining your problems."

Lyme can drive you crazy for example, not knowing if this pain is caused by the Lyme or is something else there you need to worry about.

So Michael.. what info on Bands 18 and 93 kDa
do you have that show it's the european strain? I thought thety if they appeared on an IgM, they indicate late neuro Lyme.

Barb

edited to include the message that Igenex' PCR does measure the DNA for both the European strains and North American strain

I have muscular pain, DDD, DJD, arthritis in just about every main joint, sinus problems, visual disturbance, ringing in ears, balance problems, short and long term memory problems, mix words and cannot find them--or put a sentence together on a bad day. Been diagnosed over the years with Interstitial cystitis, pelvic floor dysfunction, endometriosis that made for 5 surgeries ending in total abdominal hysterectomy, depression, anxiety, fibro, cfs, possible lupus, had mini stroke 7 yrs ago, IBS--just to name the ones I can remember.

I suffer from insomnia, night sweats, muscles tightness, tmj, headaches, muscle twiches, balance problems. There is more but cannot think right now

Surgeries:
3 laporoscopies
lt tube and ovary removal
TAH.
cervical spine fusion of c 4-5 6-7
meniscus repair on lt knee
acl reconstruction lt knee

the last 4 were in the past 4 years--the knee surgery seems to be the trauma that brought the lyme out in full blast--long story was fired from my job, could not collect workman's comp-even though injury occured at work, then out of work a total of 10 months with payment for 4 weeks from STD-still fighting UMUM for the LTD--my husband had to leave home and travel to work to replace my income--I had a total breakdown--post traumatic type syndrome--

I do not remember what bands were positive--cannot find copy of blood work.

Cathy

quote:

---

Originally posted by bpeck:
So Michael.. what info on Bands 18 and 93 kDa do you have that show it's the european strain? I thought thety if they appeared on an IgM, they indicate late neuro Lyme.

---

In the European labs they look for antibodies in the WB in somewhat different bands. Below I have listed bands tested by Igenex and by labs in Germany. I have also indicated test results from my latest Igenex WB:

IgG
Igenex Germany My WB results
14 na
17 na
18 +
21 na
22 na
23-25 +/-
28 na
30 30 +/-
31 +/-
34 +/-
37 -
39 39 +/-
41 +
43 na
45 -
56 na
58 58 +/-
66 +/-
73 -
83 83 -
93 -
100 na

IgM
Igenex Germany My WB results
17 na
18 -
22 -
23-25 -
28 -
30 +/-
31 -
34 -
37 -
39 39 +
41 41 +
45 -
58 +/-
66 +
73 -
83 -
93 +/-

The germany bands were found in http://health.groups.yahoo.com/group/EuroLyme/message/19941.

As I undestand it, in Germany they look for all three strains (Bbss, B.afzelii and B. garinii).

As you can see, I have "hits" in almost all of the overlapping bands, except 83 on IgG.

I don't know what this means though. I'm just suspecious about it and would like to get tested in Europe.

I don't think the listing of Germany bands in the above reference is complete. It's possible that individual labs test in more bands (just like IGeneX does it.)

quote:

---

Originally posted by bpeck:
In Oct 2002 MDLabs:
2 positive PCRs, (one for borrelia DNA
the other for Bb Spirochete load.

---

How do they test for the spirochete load?

If many of us can't even get a postive PCR, even though we're obviously infected, how does MDL manage to measure the load?

Is this the antigen test you're talking about?

And in my test, b. burgdorferi is listed as the species on the results...

b azfelli, and b garni both share some of the same DNA with b burdorferi.. and I know (because I asked) Igenex PCR test will measure all three..
I don't know about MDL, though -I *thought* it was just measuring b.burgdorferi -

I don't know of any PCRs (even in Europe) that test for just one species. Japan was the only country that had PCRs that could ID strain in 2002 when my first test was done.

Barb

quote:

---

Originally posted by cmichaelo:
How do they test for the spirochete load?

---

i don't think there is any quantative analysis for spirochete load. the stricker panel, nk cell levels are used inversely to try and detect that. but that is imperfect IMO.

the rest is clinical, symptoms and herxes.

remember you can have a positive wb and elisa by CDC standards and be completely asymptomatic. i know someone who tests repeatedly positive on all ten bands, never been sick.

he is a dr. he even went to NIH to have special testing done on him for scientific value. we only discussed this briefly.

i never asked but he may have the same double chromosome found among a select few europeans descendants that have kept certain people from catching the plague when people were dying all around them.

they have found that people with this double chromosome in HIV positive people do not develop AIDS and do not become sick.

food for thought.

happy holiday....