Myco P, Lymes, Autoimmune..?

[Fixit]

. Here is the list of testing that may be pertinent to treating him.

4/5/09..says he doesn’t’ feel good..see dr..swollen glands, bad allergies..

4/6/09 wakes up ticking(and has been ever since)

4/7/09 doc give one round of cephlex

Things don’t resolve..try diet changes, exercise programs, go get a tmj devise to see if help with tics…add amino acids and vitamins. Cannot find a pandas doc to prescribe abx.

2/19/10 myco p igg is 631 at labcorp.. above 320 is pos..no igm

2/25/10 ish start biaxin and steroid..tics go through the roof by 2/28/10 add augmentin 2 weeks later for 2weeks. (do get a 4 day response from steroid a few weeks later that rebounds)

3/12/10 it looks like it drops but still high as new test with Quest..igg is 1.60 above.90 is pos..no igm

4/19/10 igenex.WB..band 41 + on igm and igg , band 39 ind on igm(none of docs think it is lymes)

4/22/10 camk 160 per Cunningham test

5/27/10 do PCR with medical diagnostic in Hamilton nj and says it is negative

7/10 do month long taper with beautiful response..90-95%

8/19/10 per quest..igg 1.79 above.90 pos

9/13/10 per labcorp..igg 298 (still came back as abnormal-high)..above 320 pos and 100-320 indeterminate(but only time not totally above normal, maybe subsiding)

12/07/10 do igenex urine dot blot( tests for dna of b.burgdorferi) to be sure not lymes..samples 1 and 2 pos, sample 3 neg

1/19/11 cd57 is 1% and 16…normal range is 2-17% and 60-360……also myco p igg is 348..above 320 is pos, no igm….igg subclases 1 and 2 are below normal

3/15/11 per quest…igg 1.66 above .90 pos….looks like igg subclasses may have come back

 

SO…

Even though the PCR was neg…could it be a false negative…and there is still an infection…why can’t that test be wrong like so many others can?

 

Is it a chronic infection?

 

Could it be…like strep..in that if the infection is indeed cleared, could the antibodies to mycoplasma be attacking the basal g. in the same fashion that strep antibodies do..and there is not an infection just overproduction of antibodies?

Any thoughts for or against are welcome…we are all learning…and trying to triangulate the best option for our children.

I do not think it is strep per all the tests and based on sons throat…and prior numberous remissions from strep.

 

I do think it is one of/ or combination of myco p, lymes, autoimmune. Not sure how to procede and his gut is sensitive to certain abx, though not throwing up, pain or bowel disfunction. We had a couple of days that were 5’s but yesterday was a 6. Have been off all abx for a week.

Edited March 24, 2011 by Fixit

[MichaelTampa]

Looks a lot like a chronic infection, as you say.

 

Regarding your question on the PCR, a false negative on a lyme PCR is quite common, so, if that was a lyme PCR, yes, could easily be false negative. May be the case for PCR's for other infections, don't know about those.

 

By the way, all I needed were my symptoms and band 41 positive and band 39 IND for my lyme doc to say I had lyme. He felt the 39 IND was all he needed to see. It is the most specific for lyme. He considers IND's as positives, of course not everybody does.

 

I'm not an expert on the lyme dot blot test, didn't have it done myself, but if it found the DNA of lyme in 2 of 3 samples, I would imagine that is pretty definitive proof that there is at least some level of lyme infection. The CD57 is theoretically another piece of the puzzle showing lyme, but I have a feeling your son is too young for that to be considered reliable for many docs. How old is he? I think age 13-15 is range when kids supposedly start really making the natural killer cells measured by that test.

 

With lyme infection, I really don't think you're going to make much headway with the other infections unless you address the lyme infection. They can be addressed all at the same time, and that is often the best approach. Addressing parasites/worms can be very helpful as part of dealing with chronic infections, as these infections support each other.

 

The big question on my mind is, what type of a doctor are you seeing, and what did they say about the dot blot test results, and what did they recommend?

[Fixit]

That just it and there is so many other little things..but the above list is what stick outs to me..

The pcr was for myco p.

I just contacted Dr G N and he said the Pcr could be a false negative, you have to catch it just right, out in the open blood source.

 

Now that I know a little more about lymes, its seems indicative to me too..and also now that I went back and noted the consistently above normal myco igg levels..and knowing that myco and lymes run together. They way that mono and strep seemed to go hand in hand.

One doc llmd in NC wanted the cd57 to confirm..not thrilled with him so went to other llmd

The one in MD didn’t care about the cd57 once he saw I had the 2 pos dot blots…

 

Do I think it is chronic infection??? Yes…I think so…I mean more than I think it is autoimmune, because of the lab results, even though I think the panda docs may consider the myco p results irrelavent…and the lymes’ too

 

Do I think it is autoimmune…well, yes in the fact that he responded so well to the steroids, but why would his igg still be above normal…and why would the body keep attaching itself…even when you research myco p specialists..they say it takes 6months to 2 years to treat if chronic and then there is recovery..

 

And I don’t want to say I wouldn’t mind if things got worse with herx..but they became and are still very close to unmanageable…

If you give more steroids and it is lymes or lets say a chronic myco p infection you will most definitely loose in the long run…but what do you do so he can get through each day..

abx has become a real concern as the correlations I have with yeast, c,diff and worsening of condition.

 

If I go for pex..and there is a myco infection…wont it just return and the same if it is lymes…

 

If I go for ivig…OMG..not too much left in the tic area for more..and then I think you would add OCD.as we will soon top out on tic scale….Then he will truly be Sammy.

 

And when I say room for ivig..i think when all these kids ramp post ivig..i think of it as a herx of some sort….or could it be more infection load from unknown infections from donors….idk

I redrew ignex wb this week…was going to do co-infections but do not have $650 laying around..heard they hold blood for 3 months..maybe will try to test that sample next month if that seems the way to go…but heard they are even less reliable per a lyme patient/parent recently

 

Maybe I will restart zith..things are not great…and then retry lymes, myco p chronic protocals…

Is it possible a chronic mp infection can look and test like lymes infection?

Either way..its’ long term abx and rotating???

 

Other than Dr G Nicolson..are there any other myco p specialists on the east coast?

[MichaelTampa]

I think the myco-p alone is easier to treat than lyme. I think, generally LLMD's when treating lyme, will not treat myco-p specifically, they just treat the lyme and it gets taken care with those abx. Myco p can be tick-borne too, just like lyme, but of course it can be found in many places. A number of LLMD's believe that severely depressed CD57, such as the 16 you report above, are from lyme+myco-p.

[SarahJane]

Just found out that my son has a 677 IgG on myco p. We are just over 4 months post-IVIg. I have a different post with various questions about our situation. Myco p seems to be nasty stuff from what I've read. (I've also read Dr G N's "fictional" book, but that's a different strain in there but they are all clearly much nastier than most people think.) I wonder whether or not you can ever really get a positive for chronic myco p. Unless you are lucky enough to get IgM as positive, which shows a current infection instead of chronic, how do you get a definitive answer? We didn't run a myco p test prior to IVIg, so I don't have a comparison. It seems like a high IgG would be significant. Good luck getting it figured out & taking your next steps.