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Myco P, Lymes, Autoimmune..?


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. 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 by Fixit
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I'm thinking it's stubborn myco p...maybe not the highest that some are dealing with..but won't go away an chronic..and wonder if like lymes...once i got reply from DR G Nicolson..if it hides until it's pulled out..and i remember reading..it can hide in just one organ and not another..if i'm not mistaken...so wonder if it could be in the brain mostly...and if that would the hardest to get as it seems abx have a hard time crossing the bbb..some better than others..but seems like it is still difficult...

and i have not ruled out lymes...just trying to figure out connection...(regardless of which came first)..but are they both effecting him...he doesn't have "typical" lymes problems..though in past 2 years we had a period of 6 or so months of constant neck pain ,,but gone..and some other things that are were more mild but transient...and maybe he is fighting lymes ok, but it's really the myco p...

and again..i don't care what you call it..or if we can actually decide what it is, thought that would be optimal..but ds seems to be having a problem with some abxs or combo's and/or herxing and i want to tread lightly and properly with minimal collateral damage

 

So you are seeing some improvement with the L-carnitine and "red" dye free co-q10 for both your kids??

or are you just using for your ds...

the l-carnitine...would that be tartrate or furnarate...or is that different from what you mentioned?

and what dosage on those?

 

no didn't see your thread on pex and ins...i don't think..watch i probably posted something to that thread :wacko:

 

per doc G. nicolson pcr can be false pos or false neg...so almost seems like why bother...unless you test several times to see if you get same response...

eamom posted something i haven' had a chance to read on this....

 

ds still not doing well...compared to his brother, that is in remission, ds11 eyes are still dialated, sauce pans...

it's nice to have a side by side comparison..in dim light... dh's looked like pepper corns..ds8 were a bit bigger..but ds11 were full saucer, almost cover the whole eye ...had everyone lined up at the same time...ds8 only in remission a few weeks

 

can someone explain the eye thing again...is that the infection doing that or is that a sign of autoimmune..or just inflamation...

i forget..

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Fixit, seriously, I think you may be overthinking this lyme and myco-p thing. The tests and symptoms seem to support that your son has both going on. Most lyme docs do not focus on myco-p, because their experience is that if they focus on lyme and any other coinfections (bartonella, babesia), the myco-p will get taken care of in that process. You are not going to find out which came first, or what caused what. They may have come at same time, or not. These are fine questions to wonder about, I think we all do it, but I wonder/fear that maybe you are being distracted by these questions when ultimately the answer will not come and would not, in any event, give you guidance in what next steps to take.

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Thanks Michael...it is always nice to have you respond...and i appreciate your advice...i may be going in a bit of a loop...

I don't know if i'm concerned about which came first..as much as how to proceed, since when we did start a lyme treatment in Feb, ds took a nose dive...not just a little herx..but severely ramped...and i want to continue to treat...i'm just scared, for him....

we had to stop, and confirmed that with lyme doc and a couple of panda docs...we are more stable..at a 6..than the 8-9 that we had gotten too..but at those numbers daily functioning is close and sometimes not possible....so at this point i am still not ready to try again..i would like to get back to a 3...but i have no idea how long that would take..i am not currently willing(but i so want too)throw a steroid at him, to give him sum relief...and again at 6..there is no room for error with potential/likely ramping...i need to get to 4-5 and then would like to proceed again...wiser in direction and slower...

 

i welcome all feedback...

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Oh, I see, I had missed (or forgotten? who knows...) that part of the story of starting and things getting too much worse and then stopping.

 

Gosh, this is likely some combination of two things:

- he is really sick and has lots of bugs and the treatment you were using was VERY effective; or

- the regular detox pathways for removing toxins and otherwise dealing with die-off are less than ideal

 

So maybe you need something less effective (but still somewhat effective) or maybe different/better detox support.

 

Was it antibiotics or primarily antibiotics that were used? If so, perhaps consider try again but with herbals, perhaps best with not some souped-up extra-strong herbal combination to really clobber things, but some that are at least somewhat effective. There are many things to help with detox, and I'm not sure what you've been using, and how confident you are in it.

 

Perhaps something like "the Buhner herbs" would be useful. There are several herbs there that can be used individually or in combination. Some help with killing, some help with detox support, and some do both. I don't think there really the best, but I know they are somewhat effective, and perhaps that is what your son would do best on now. Just trying to think of how to get you through this here.

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