sanity check...myco p results

[SarahJane]

Okay...last week we found out my PANDAS son has high myco p IgG (677)...positive per the lab. Via the phone, my husband's myco p results were negative. Hubby got the test results today, and they show 1.86 high (diff lab & that's a positive). So they tell him that's showing a past infection...not going to treat it. Well, a month ago, a diff dr ran a myco p test and both hubby's IgM and IgG were negative then. So, correct me if I'm interpreting this wrong, but the positive IgG is now showing a current infection, right? He even told them about PANDAS and our son's levels. He'd taken the previous test results with him to the previous appt, but I'm not sure they were copied for his file or if they were, maybe they didn't look at them.

 

So, I've made a phone call and am waiting for a call back...not holding my breath tho' since everyone was out. Did shed a few tears tho'. What are we supposed to do when even the tests show the need for treatment, but we don't/can't get it? Meanwhile we've made a shift in my son's treatment to try to get rid of the myco p. And hubby has been trying to get this illness treated since December...suspect chronic myco p, but now we have a positive IgG, so I'm not sure if it's acute or chronic now.

 

Wishing I didn't have to know so much about this. Wishing harder that the people that are PAID to know about this stuff actually knew more. Blah.

[Bat_Sheva_Myllys]

Based on Sandra's 6 years experience with MycoP - IgG positive means that MycoP is hiding somewhere in the body. It is rising because the bacteria is right there and can be noticed, and if not treated by long term serious suitable abx, it will be there and keep affecting both.

Sandra's IgG kept rising from 60s (35 is the positive border line here) right after the actual infection (we could not avoid noticing its persistent signs) up to 200s after several years and its level went down each time she was treated with abx, Prednisone or IVIG, and when not treated for 2.5 years at all it got to its top in teh 200s, and then, once we started Azith 500mg/day it got down to 150 in 3 months then to 100 and all the way to 39 in 9 months.

I think it is about the time physicians changed their way of thinking about MycoP.

 

I still want to try Azith on hubby, whose IgG was last year in the 100 level, but he was not treated because he is on another type of very long term ABX (several years already) for post cancer infectious side effect. What we need is some serious doctors in this country.

So far Sandra is the only treated case of PANDAS-PITANDS I know of and all we have is one GP who takes us seriously. Specialists find it too tiring to bother.

 

The most important thing is that now, after 1.25 years on Azith I can see a great change in cognitive ability and OCD control - the condition is far from good but not as horrific as it used to be. Took her a full hour to get dressed and another to get to the door, but she was on the yard for 1 hour today with the dogs, playing in the snow, and called me on the phone only 5 times, but she got up and walked without help and she went out alone (with the 3 dogs) and was happy to do so. Life is smiling at me once again.

 

Get them on abx!

[Guest pandas16]

I believe there is some debate on this. Some doctors view a positive IGG as an indicator of a past infection some view it as an ongoing infection. I have PANDAS and when I treated my mycoplasma IGG with high dose Biaxin, I had an absolutely awful reaction to it. Antibiotics can sometimes stir up other bacteria that weren't problematic before. I think it also depends if your child is immunodeficient or not. (just an opinion) In the case of immunodeficiency where the child cannot clear the infection then maybe an IGG should be looked at differently. I know an immunodeficient boy who had PANDAS that did absolutely great on high dose biaxin. I have no immunodeficiency and did horribly. Maybe this is just a coincidence though.

Edited April 2, 2011 by pandas16

[pathfinder]

My son has immunodeficiency and had Mycoplasmas.P in the past. he did well with clindamycin but did very bad with biaxin. We tried biaxin several times afterwards to eradicate Myco but every time he was on it, his pandas symptom went up.--irritation and rage--- We are seeing Lyme dr for Myco. P issue as I felt Myco is something out of pandas league.

 

quote name='pandas16' timestamp='1301778511' post='108768']

I believe there is some debate on this. Some doctors view a positive IGG as an indicator of a past infection some view it as an ongoing infection. I have PANDAS and when I treated my mycoplasma IGG with high dose Biaxin, I had an absolutely awful reaction to it. Antibiotics can sometimes stir up other bacteria that weren't problematic before. I think it also depends if your child is immunodeficient or not. (just an opinion) In the case of immunodeficiency where the child cannot clear the infection then maybe an IGG should be looked at differently. I know an immunodeficient boy who had PANDAS that did absolutely great on high dose biaxin. I have no immunodeficiency and did horribly. Maybe this is just a coincidence though.

[nicklemama]

Hmmmmmmmm.....my DS's mycoP was negative. I just had mine done and the IgG was positive at 1.43 w/ a reference range of >1.10 positive. It says on my report that this does not differentiate between past and present infection, but must be interpreted in conjuction w/ clinical signs and symptoms (of which I have none). My IgM was negative.

 

For what its worth, DS was rx'd biaxin as the initial abx for treating PANDAS and did great on it. It started working w/in a week's time. In 60 days, it got him back to maybe 90%.

 

Unfortunately, he was switched to zithro, then augmentin and now back to zithro and we are not getting those same good results.

Edited April 2, 2011 by nicklemama

[lmi1973]

Uh oh, Pathfinder, now I'm worried a little... My son has Low IgG3 levels, even just 5 weeks post ivig, so Dr. Trifilleti says he does have an immunodeficiency. Dr. T also found that he has a mycoP infection and has him on 500mg of biaxin 2x/day (son is 10, about 80 lbs.) for 30 days. He's been on the biaxin for about 8 days with no notieable improvement; but, I'm guessing it can take longer than a week. I hope the biaxin works soon!

 

Sarah Jane, I hope your husband gets some abx soon too! I'm worried my husband has this also as he is always run down and he's only 35?! He does have high blood pressure and is probably 30-40 lbs. overweight, so who knows, but, it's worth looking into though. Do I just have his doctor order the blood work for him? I guess I should get my blood tested too to be on the safe side.

 

Ah, another fun Saturday night, lol...

[pathfinder]

LauraMary

I don't want to worry you unnecessarily but my son also has very low subclass IgG3 levels.

He had at least 2 myco P in the past 3 yrs.( only 2 of them were distinguished because dr just did not test Myco back then) and I really think they inflicted some damage to his already hampered pandas brain but the good news is that he is making come back in a way I never thought possible so maybe damage was not permanent. This may sound really funny to some but I want to say that I feel so fortunate that my son has pandas and myco( lyme being tested)because we can treat them.

[lmi1973]

Pathfinder, this is all good to know. Any information is good information! I don't know how long to give the biaxin, but another mom has shared that her son didn't see improvement until about 30 days and now he's doing really well. My son is only 5 weeks post ivig though so he is still healing from that as well. Just so hard to wait and so hard to know what to do sometimes with this. I totally get what you are saying with that sounding funny. I was so excited to find out about mycoP infection. Who else but pandas moms would be thrilled for info. like that;)? My son also has staph infection in nose and we are following up with specialist to try to clear out; we've been through two ents and an allergist already and this last ent is referring us to a "pediatric ent", I think mainly because he can't figure out why my son's nasal passage is still so inflamed after being on steroid sprays and abx for so many weeks, but also because he is very sick of me. I just truly don't know if he is not improving because the ivig has not had enough time to do it's magic, or if the biaxin hasn't had time to work, or now if biaxin is the right abx, and also if the staph infection is something more serious and also may need a different abx. But, I'm guessing that is the struggle we all go through. A big guessing game since no one treatment fits every child. Does your son also have chronic sinus issues? Dr. Trifilleti indicated that low IgG3 levels specifically made him more vulnerable to sinusitus. Has your son needed more than one ivig? Dr. T wants our son to have more blood work in 2-3 months to see if these levels have come up at all.

Thanks,

Laura

[SarahJane]

I'm not at home to look at my son's tests, but LauraMary, I looked at them after our other communications. His levels were all in normal range but igg 3 & maybe 4 were low...still normal tho'. Just wondering what T said was low. You can PM or email me if you don't want to post here. My hubby didn't reach the dr's office on Fri, so we'll have to call Mon. Argh! Your hubby's doc can run them but might press back. Has he had "bronchitis" because sometimes it gets listed that way. Does he have asthma? That's what my hubby was dx'd with...mild asthma (which I think is really his current/chronic myco p infection). I'm starting to think that myco p is even nastier than strep...and I hate strep.

[lmi1973]

Hi Sarah Jane, my son's levels were also actually normal when I look at the results - they were 25 for IgG3, but Dr. T said should be 65 as each subclass is based on a certain percent of the total of all the four subclasses. I noticed the IgG4 was also low, but normal, but he did not mention this one to me.

 

Here is a link he shared with me on subclass deficiencies that I found really interesting:

http://www.primaryimmune.org/publications/clinic_focus/cf_dec98.pdf

 

 

Husband doesn't have asthma. Just chronically run down. He does have arythmia and high blood pressure, terrible diet and no exercise though. But, for 35 (I'm almost 38), he just seems like he has a lot less energy than I do so it makes me wonder!

[SarahJane]

My ds was at 59 on IgG subclass 3. Hmmmm. That article is over my head or maybe I need more coffee to understand it. I'm more up on bizarre effects of infections than I am the immune system components. lol @LauraMary, myco p can cause cardiac issues & a whole host of other things. Check out www.immed.org for the best myco info. Dr. Garth Nicholson is THE MAN for it. If your husband has ever had "bronchitis" or even if he hasn't, a myco p test could be good...especially since your ds tested positive. Was he ever in the military or a paramilitary organization? That could be relevant with mycoplasmas. Here's another site with myco info: http://www.shasta.com/cybermom/asimple.htm

 

I finally was able to talk to a real, live person at my husband's dr's office. That nurse was supposed to have someone else call me back. Also have a message into PANDAS doc about hubby's myco p IgG to see what he thinks we should do for ds. We still have another week of Biaxin but were supposed to add the steroid burst this week if we didn't see improvements on Biaxin last week. (Some slight improvements but nothing major.) On another post, I got warnings against doing steroids for myco p, but can't find articles that indicate an issue. (In fact, I found the opposite...that steroids with abx was supposed to be good for myco p.) So I'm confused. We didn't see a big improvement on steroid burst prior to IVIg...we did one without abx when we were trying to get symptomatic relief. We did get about a week of less-than symptoms but didn't realize that's all we were going to get until the rages came back. It's hard to feel like you are spinning your wheels. I wanna do what's best for all of us in the family (including the fact that I should have my myco p levels tested), but I'm unsure what the best course of action is for us. Whew. Will it be better or worse when all the protocols are finally figured out for PANDAS. At least now, it seems like the treatment options are unlimited in a way. If they are defined, will that put us in more of a bind if something doesn't work. Hmmmm.

[butterflymom]

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Edited October 9, 2015 by tampicc

[butterflymom]

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Edited October 9, 2015 by tampicc