Lyme testing

[roxie60]

I will Sushi. Nurse was going to mail them to me so should have in a couple of days, thx.

I would not have taken the Igenex tests if not for the CD57 being low so now I am really confused, what else would make CD57 low?

 

[vamah]

I agree, post your results when you ge them. As for cd57, I have heard that hhv6 can cause that to be low (probably other infections as well). You should look at research done by Jose Montoya and take that info to your doctor and ask to be tested for that, ebv and cmv. Those tests are cheap and there is no reason for them to refuse to run them, so push hard if you have to. I really feel for you, as your situation sounds similar to mine. I forgot, what was your cd57?

 

[vamah]

Don't know if you have said, but did you develop symptoms following viral illness? What were your first symptoms and how quickly have they progressed?

 

[Creekee]

roxie60: I agree with Sushi and vamah. Get your results. And push for those other tests. Mycoplasma, too.

Fwiw, I'm now positive by lab for EBV, HHV-6, protomyxzoa rheumatica and mycoplasma, yet my Advanced Lab culture came back completely negative for Lyme. My CD57 is currently 40. So either one of those other infections is causing a low CD57, or my Lyme test is a false negative.

It's all sooo frustrating and I'm really sorry you're having to deal with it. 'Specially when feeling crappy.

 

[roxie60]

I agree, post your results when you ge them. As for cd57, I have heard that hhv6 can cause that to be low (probably other infections as well). You should look at research done by Jose Montoya and take that info to your doctor and ask to be tested for that, ebv and cmv. Those tests are cheap and there is no reason for them to refuse to run them, so push hard if you have to. I really feel for you, as your situation sounds similar to mine. I forgot, what was your cd57?

CD57 was 55 three weeks ago, that prompted the IGenex test

 

[roxie60]

Don't know if you have said, but did you develop symptoms following viral illness? What were your first symptoms and how quickly have they progressed?

I was told I had mono 1/1995 (to ignorant to ask for test results back then, just believed what all Drs told me, wishing I had that test result now, EBV tests now just show 1:160 (past infection, not current)). I was told to stay home one week and rest then go back to work. That is what I tired to do but I barely was able to 'get through' three days a week of work. That went on for months, I did not 'recover' to the point of being able to work full time, take care of home, do hobbies for at least 10 months I fought sever fatigue and fevers. Then I was much better for years except for sinus infections, respiratory issues (at least that is what I remember).

This latest round of many symptoms that vary day day, month to month, started about 2005. I was dx with unknow viral illness I think in 2005. From that point on it has been a steday increase in symptoms and decrease in overall health and ability. The last 5 years have been the worse.

 

[roxie60]

roxie60: I agree with Sushi and vamah. Get your results. And push for those other tests. Mycoplasma, too.

Fwiw, I'm now positive by lab for EBV, HHV-6, protomyxzoa rheumatica and mycoplasma, yet my Advanced Lab culture came back completely negative for Lyme. My CD57 is currently 40. So either one of those other infections is causing a low CD57, or my Lyme test is a false negative.

It's all sooo frustrating and I'm really sorry you're having to deal with it. 'Specially when feeling crappy.

Was your EBV done using serum or PCR? I decided when I am able to read more I am going to read Burrlusconi Lyme dx and guidelines and see what I can glean from that document. I was impressed with his responses on that video I posted on Lyme. Has been through a lot trying to help people and doctors regarding Lyme

 

[roxie60]

roxie60: I agree with Sushi and vamah. Get your results. And push for those other tests. Mycoplasma, too.

Fwiw, I'm now positive by lab for EBV, HHV-6, protomyxzoa rheumatica and mycoplasma, yet my Advanced Lab culture came back completely negative for Lyme. My CD57 is currently 40. So either one of those other infections is causing a low CD57, or my Lyme test is a false negative.

It's all sooo frustrating and I'm really sorry you're having to deal with it. 'Specially when feeling crappy.

Do you or your doctor think you have lyme in spite of negative tests?

 

[SOC]

@roxie60, have you been tested or treated yet for any form of OI? Some of your symptoms sound typical of that and it is treatable (to some extent) and could significantly improve your quality of life.

As I'm sure you've read here at PR, but I'll mention it again just in case -- very few local docs are any use whatsoever in treating ME/CFS. They simply don't know which tests to run or how to interpret the tests correctly in the context of the illness. You will have much better luck with disability of you can get evaluated by an ME/CFS specialist. That's not easy if you're in Illinois, but worth it nonetheless.

I've just been through a round of specialists at my local mega-clinic in Illinois -- cardiologist, pulmonologist, endocrinologist. They, along with my GP, pretty much just blow me off. Hubby was right pissed at the endo today for treating me like there's nothing wrong and not agreeing to run more than the most basic tests which have already been ordered by my ME/CFS specialist. I get SO much more from seeing Dr Rey once or twice a year. And it's a hell of a lot cheaper than paying through the nose for all these local docs who do nothing and charge outrageously.

 

[roxie60]

Posted my results in another thread but realized this is where probably should post them .

IGenex test results 11/2013

There are apparently some Lyme doctors that consider IND (Indeterminate as significant since if it were a negative result it would have said negative and not IND). Also in bold uppercase asterisked print on the IGenex results it says the following (doctor did not comment on this)

****PRESENCE OF ONLY ONE DOUBLE STARRED BAND OR INDETERMINATE DOUBLE STARRED BANDS IN A NEGATIVE REPORT MAY INDICATE CLINICAL SIGNIFICANCE**** THEREFORE, WE RECOMMEND TESTING WITH ANOTHER METHOD AND/OR RETEST IN 4-6 WEEKS.

Band Intensity:

Negative (-) no band detected
Indeterminate (IND) band present with intensity < than standard
Positive (1+ - 4+) band present at intensity > than standard

IFA, B Burgdorferi G/M/A <40 Negative
Lyme IgM Western Blot
IGenex IGM result - Negative
CDC/NYS result - Negative
18 kDa -
**23-25 kDa -
28 kDa -
30 kDa -
** 31 kDa IND
** 34 kDa IND
** 39 kDa -
** 41 kDa IND
45 kDa -
58 kDa -
66 kDa -
**83-93 kDa +


Lyme IgG Western Blot

IGenex IGM result - Negative
CDC/NYS result - Negative
18 kDa -
**23-25 kDa -
28 kDa -
30 kDa -
** 31 kDa -
** 34 kDa -
** 39 kDa -
** 41 kDa +
45 kDa -
58 kDa -
66 kDa -
**83-93 kDa -


Multiplex Borrelia Burgdorferi Serum
Genomic Bb - Negative
Plasmid Bb - Negative

Multiplex Borrelia Burgdorferi Whole Blood
Genomic Bb - Negative
Plasmid Bb - Negative

 

[roxie60]

@roxie60, have you been tested or treated yet for any form of OI? Some of your symptoms sound typical of that and it is treatable (to some extent) and could significantly improve your quality of life.

As I'm sure you've read here at PR, but I'll mention it again just in case -- very few local docs are any use whatsoever in treating ME/CFS. They simply don't know which tests to run or how to interpret the tests correctly in the context of the illness. You will have much better luck with disability of you can get evaluated by an ME/CFS specialist. That's not easy if you're in Illinois, but worth it nonetheless.

I've just been through a round of specialists at my local mega-clinic in Illinois -- cardiologist, pulmonologist, endocrinologist. They, along with my GP, pretty much just blow me off. Hubby was right pissed at the endo today for treating me like there's nothing wrong and not agreeing to run more than the most basic tests which have already been ordered by my ME/CFS specialist. I get SO much more from seeing Dr Rey once or twice a year. And it's a hell of a lot cheaper than paying through the nose for all these local docs who do nothing and charge outrageously.

I'm going to have to refresh my brain on what OI is but I dont think I have that. I do have PEM at times, well not as bad right now as at other times but I still fatigue easily.

 

[SOC]

I'm going to have to refresh my brain on what OI is but I dont think I have that. I do have PEM at times, well not as bad right now as at other times but I still fatigue easily.

OI is short for orthostatic intolerance. It comes in many forms and many, maybe even most, PWME have some form or another. The ME/CFS Primer for Clinical Physicians says,

Autonomic dysfunction, if present, is manifested by an inability to maintain an upright posture or feeling faint or weak upon standing (orthostatic intolerance). In such cases, tilt table testing may show neurally mediated hypotension (NMH) or postural orthostatic tachycardia syndrome (POTS).

You can read more about OI in ME/CFS and suggested treatments on pgs 10 and 24 of the ME/CFS Primer.

Low blood volume can be part of OI and is fairly common in ME/CFS. Treatment for it and other OI issues can significantly improve your quality of life. It is quite possible that OI treatment can substantially improve your fatigue, ability to be upright, and cognitive symptoms. I don't think it really affects PEM, though.

I strongly suggest you read this simple article about OI here at PR. There is also a lot of discussion in threads here about OI, including neurally mediated hypotension (NMH), postural orthostatic tachycardia (POTS), low blood volume and other related problems. You could check in the Autonomic, Cardiovascular, and Respiratory subforum.

 

[JT1024]

I am attending a Lyme Symposium tomorrow at Massaschusetts General Hospital (MGH) in Boston. The majority of speakers have presented at ILADS conferences.

There are actually two "Symposiums" tomorrow both at MGH. One is for clinicians, the other for patients. Given my work, (and that they will pay me to attend), I am registered for the clinician symposium. Given my lab results and the fact that the LLMD that I had an appointment with just before my brother died, I want to spend some time at the patient symposium.

Hopefully I'll have something to share in the near future. Given my work schedule and declining health, I may not be able to post as quickly as I would like.

 

[roxie60]

Look forward to your update JT. I am curious if more definitive testing exists now. If more Drs are getting educated on this infection and its co-infctions. How are they getting the word out to clinicians? Is the CDC planning to changed their guidelines for dx and treatment for acute and chronic Lyme?

 

[roxie60]

Based on what I'm reading (and re-reading multiple times ) that even my results (NEGATIVE) could still have Lyme. I have found comments that if you have had untreated Lyme for years your body may have given up making enough antibodies such that as years go by your chance of positive test diminishes. Any one else also hear this, that possible immune system too compromised to create enough antibodies to test positive for Lyme?

Posted my results in another thread but realized this is where probably should post them .

IGenex test results 11/2013

There are apparently some Lyme doctors that consider IND (Indeterminate as significant since if it were a negative result it would have said negative and not IND). Also in bold uppercase asterisked print on the IGenex results it says the following (doctor did not comment on this)

****PRESENCE OF ONLY ONE DOUBLE STARRED BAND OR INDETERMINATE DOUBLE STARRED BANDS IN A NEGATIVE REPORT MAY INDICATE CLINICAL SIGNIFICANCE**** THEREFORE, WE RECOMMEND TESTING WITH ANOTHER METHOD AND/OR RETEST IN 4-6 WEEKS.

Band Intensity:

Negative (-) no band detected
Indeterminate (IND) band present with intensity < than standard
Positive (1+ - 4+) band present at intensity > than standard

IFA, B Burgdorferi G/M/A <40 Negative
Lyme IgM Western Blot
IGenex IGM result - Negative
CDC/NYS result - Negative
18 kDa -
**23-25 kDa -
28 kDa -
30 kDa -
** 31 kDa IND
** 34 kDa IND
** 39 kDa -
** 41 kDa IND
45 kDa -
58 kDa -
66 kDa -
**83-93 kDa +


Lyme IgG Western Blot

IGenex IGM result - Negative
CDC/NYS result - Negative
18 kDa -
**23-25 kDa -
28 kDa -
30 kDa -
** 31 kDa -
** 34 kDa -
** 39 kDa -
** 41 kDa +
45 kDa -
58 kDa -
66 kDa -
**83-93 kDa -


Multiplex Borrelia Burgdorferi Serum
Genomic Bb - Negative
Plasmid Bb - Negative

Multiplex Borrelia Burgdorferi Whole Blood
Genomic Bb - Negative
Plasmid Bb - Negative

 

[Sushi]

Based on what I'm reading (and re-reading multiple times ) that even my results (NEGATIVE) could still have Lyme. I have found comments that if you have had untreated Lyme for years your body may have given up making enough antibodies such that as years go by your chance of positive test diminishes. Any one else also hear this, that possible immune system too compromised to create enough antibodies to test positive for Lyme?

Yes, this is possible from what I have read and what my doctor has said. Sometimes they do an "antibiotic challenge" for xx weeks or months to see if that brings Borrelia out of hiding. Or, they do a PCR test looking for the DNA (there is a test that looks for 33 strains of Borrelia rather than the relatively few tested for by Igenex), or try to culture it or give the Infectolab LTT test.

And, did they test for Bartonella? That is co-infection that is often being found in our patient group--though Igenex only tests for 3 of the many strains I believe.

Sushi

 

[roxie60]

Yes, this is possible from what I have read and what my doctor has said. Sometimes they do an "antibiotic challenge" for xx weeks or months to see if that brings Borrelia out of hiding. Or, they do a PCR test looking for the DNA (there is a test that looks for 33 strains of Borrelia rather than the relatively few tested for by Igenex), or try to culture it or give the Infectolab LTT test.

And, did they test for Bartonella? That is co-infection that is often being found in our patient group--though Igenex only tests for 3 of the many strains I believe.

Sushi

The PCR was also done for Bb plasmid and genomic and both were negative. Bartonells not tested for since wanted to see what this test showed before sending another $800 to test for Bartonella. Looks like from what I have read it would have been more prudent to do an 'antibiotic challenge' prior to sending this $475 to IGenex. Now I'm going to be reluctant to part with another $475 much less more for co-infections.

 

[roxie60]

Here is another article from Australia tht talks about false negative Lyme test results.

http://www.lymedisease.org.au/about-lyme-disease/interpreting-lyme-disease-blood-tests

 

[Sushi]

The PCR was also done for Bb plasmid and genomic and both were negative. Bartonells not tested for since wanted to see what this test showed before sending another $800 to test for Bartonella. Looks like from what I have read it would have been more prudent to do an 'antibiotic challenge' prior to sending this $475 to IGenex. Now I'm going to be reluctant to part with another $475 much less more for co-infections.

Won't insurance pay for it? And IgeneX now seems to do the LTT test that Infectolab does. It is a pretty accurate test for an active infection.

If you want to test for Bartonella, there are better tests than the one IgeneX does as it only tests for 3 strains.

This guy, Scott Forsgren, knows a great deal about Lyme testing: http://www.betterhealthguy.com/emerging-tests-for-tbis

Sushi

 

[roxie60]

Can someone explain to me wht is a Lyme Disease Cycle? Is this the same as what I describe sa 'flare ups', these last 6-8 weeks where I am very ill and low functioning vs after that there is a period of weeks/months where I am 'less ill' and a little more functional.

I am reading about Late Stage Lyme and they keep talking about a 'lyme cycle'.
http://www.lymedisease.org.au/about-lyme-disease/late-stage-lyme-disease/