KaraM Posted February 26, 2011 Report Posted February 26, 2011 Dr. B. suggested that I be tested for strep and myco p. My doc wasn't in yesterday when I called (and Dr. B is closed on Friday), but the receptionist read the results to me. She said both the ASO and anti DNase B were negative. The myco P was 2.2 (ref. range <.9). I've read some things that imply this could just mean I had an infection as some point (I know I did about 7 or 8 years ago). Could it mean I am carrying an infection still? Could this be what is causing my dd8's exacerbation? Thanks for any thoughts you have to offer. Kara
amyjoy Posted February 26, 2011 Report Posted February 26, 2011 Hi Kara are you saying that the mycop igG was high? was the igM normal/low? if so, my understanding is that this would imply a past infection, that you have antibodies to the myco but not a current infection / trigger. but i would guess there may be controversy about what that means in our community. is there still some myco in you, that is triggering DD's exacerbation, with a negative igM? does anyone know - does mycop go intracellular? is there a test for mycop substrate/antigen? also it may make sense for you to retest in a month, to see if these are stable numbers for you or actually on the move.
dut Posted February 26, 2011 Report Posted February 26, 2011 (edited) Hi - it is my understanding that although many drs will read a negative IgM and positive IgG as a past NOT current infection, that, especially, in older adults (40 or older) that this may mean a reinfection. So you can have a current infection without a rise in IgM. http://jcm.asm.org/cgi/content/abstract/30/5/1198 Also mycoplasma can indeed go intracellular and like Lyme they are stealth pathogens, (myco - pneumoniae, fermentans, hominis and others) so you may have one and not be producing anitbodies at all. A better means for testing is to do a PCR blood test. I e-mailed a doctor who has been studying the role of mycolplasmas in CFS/Gulf War Illness and other chronic disorders, Dr Garth Nicholson, and he was kind enough to mail me back with the name of a lab that he feels is equipped to properly test for mycoplasmas. In his opinion, one of the few such equipped labs in the country. http://www.vipdx.com/ VIP labs in Reno. He also said that in lectures held at NIH, mycoplasmas have been implicated in 25% of PANDAS cases. In GWI and CFS, mycoplasma fermentans has been shown to be the culprit and in many instances people are positive for more than one mycoplasma type when chronic illness is present. I came back positive for myco p. on IgG and am increasingly feeling that myco may be our issue. We are exploring, with our ped, going through VIP labs to do the PCR testing with both kids (both PANDAS dx and both negative for myco but dd often presents with longterm cough with PANDAS symptoms). I'll report back when/if we find anything out..... Edited February 26, 2011 by dut
KaraM Posted February 26, 2011 Author Report Posted February 26, 2011 Hi - it is my understanding that although many drs will read a negative IgM and positive IgG as a past NOT current infection, that, especially, in older adults (40 or older) that this may mean a reinfection. So you can have a current infection without a rise in IgM. OK - if I understood the receptionist and took notes correctly it was: IgM 0.69 IgG 2.20 So AmyJoy's understanding is that this would mean past, not current. But DUT is saying that in adults over 40 (like me) it could mean current. Thanks for your replies. I'll look at those links. If anyone else has any thoughts, please chime in. I know people may see things differently - but I like to hear all sides. Kara
norcalmom Posted February 26, 2011 Report Posted February 26, 2011 my pandas/ mycoP kid gets that long term cough too. It dry, non productive - it seems like NOTHING, not even something you would take him to the doctor for because there is no fever, no malaise, just somewhat croupy cough that last a little longer than a usual cold. (3 weeks or so). He has igg of 2450 (normal is less than 100) and no IgM for mycoP. Blood was drawn when he was at his most healthy - completely asymptomatic, AND he had been on high dose azithro for about a year. Two doctors said it meant nothing, just that he had had it in the past, but the LLMD saw it in his record when I was getting him checked for Lyme. Said a titer that high means his body is conintuing (unsuccessfully) to fight it...the IgM only stays high for a short period. AND the IgG will also start falling, even if infection still present. Most cronic mycoP cases - they don't produce either. Dr. Nicholoson concurred, he is dealing with a chronic mycoP infection. So - PCR test is better. But, my understanding it still is not that accurate. If posititve - yes you are positive, but if negative - might want to retest again in future if you have any suspicions (or if someone else in you family is positive, as this is a communicable disease). I haven't done too much research on that, but in a couple (older) papers I read, that was the case. You might want to ask the lab % of false negatives - I'm sure they will have more up to date information. If anyone has anyone has seen any papers on mycoP titers, and what a normal curve is after exposure / infection with mycoP is, I'd be interested! I think the MycoP is supposed to fall back to normal range (but don't know how long that is supposed to take).
sf_mom Posted February 28, 2011 Report Posted February 28, 2011 I am positive for mycoplasma, lyme and titers for three viruses. Suspected of Bartonella/Babesia. Thankfully the mycoplasma gets treated along with Lyme protocol. There might be more there for you and worth investigating further. Our older DS's first symptom of PANDAS/chronic infection was a dry unproductive cough for one year prior to sudden on-set and it is felt to be Bartonella and not mycoplasma by our LLMD. Currently, our son has one remaining symptom and it is that dry unproductive cough (very mild and currently resolving) that some would interpret as a TIC. Even though I am positive for mycoplasma my children are negative. Anyway, it is something that can be passed back and fourth within the household and similar strep/strep titers you may find more family members positive. I've posted this article before but it is one of the better ones I have read on mycoplasma. http://www.drgregemerson.com/fact-file/mycoplasma -Wendy
dut Posted February 28, 2011 Report Posted February 28, 2011 SF Mom - were the myco tests that you did for yourself and your children, IgG and IgM or did you do PCR on blood? I'm aware that the Igs can show false negatives and am trying to get a handle on how reliable the PCR testing may or may not be... thanks... (Feeling more convinced that dd's underlying issue may be myco but both PANDAS kids negative on Igs but I'm positive for IgG)
sf_mom Posted February 28, 2011 Report Posted February 28, 2011 You know we got such a great case manager 'our LLMD' that I stopped taking copies of results.... so with the mycoplasma they just told me I'm positive and that my Lyme treatment would take care of the infection. I am not sure which lab or IgG/IgM as a results. Our LLMD did say chronic mycoplasma can be just as toxic as Lyme and very, very, very hard to find/test. He was very concerned where we originally tested my children for mycoplasma and said we would revisit at some point via their preferred lab. I tested through our LLMD and my children were tested via pediatrician.
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