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Would Dr. J address this or Dr B??? Or do I have too see another specialist?

 

 

Dr B does treat mycoplasma, he's been treating my son. His trigger was Mycoplasma. I don't know much about Lyme treatment but I recall that this could somehow be related to lyme disease as well.

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I'm with her, I don't understand mycoplasma either. My son has had very high results( 953 in sept. 2012) but no outward signs of any colds or anything. What is the differences in IgG and IgM positives? Western blott was negative in Sept. Tested in Nov. myco was 582, has been on zithromax 250 once daily since Sept. Waiting on test results from Monday. OCD coming back, bothering him alot. On the good side Vitamin D level finally came up to 32 this time.

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Dr B or Dr. J will treat mycoplasma. My son's IGg was over 5.0 (very high) and after treating for a year, it is below 3.75. If you are interested in research, look up Dr. Garth Nicholson and Gulf War Syndrome. He finds that Mycoplasma is a big trigger for these problems.

In my daughter's case, they say her elevated IgG's are not high enough to be a concern, even though it's been 1.5 years. Having her tested again next week, as we've been sick alot since xmas holiday.

Edited by philamom
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My DD10 IgG is 1731, her IgM is 1282, she is on her first round of Biaxin - Dr T is treating her. Her Western Blot came normal except for an abnormal IgM p41 Ab. I'm still concerned and want her tested further for Lymes. Everything I've read on Mycoplasma says it's very hard to treat. We've been homebound for a month so far.I hope we're on the right course, seeing small improvements.

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Lisa3 The more I read the more it seems that many of the PANDAS kids also have Lyme and vice versa. Mycoplasma is also carried by ticks so it would be worth exploring. Band 41 is known to cross react with a number of illnesses, but it is also commonly the first band to show up with Lyme, so its hard to make any conclusion on Band 41 alone. LLMD's assess physical symptoms along with Western Blots by the more sophisticated Lyme testing centers such as Igenex and SUNY Stonybrook, request "show all bands". Quest and standrd labs only test for a small number of strains of Bb while Igenex and Stony brook test for hundreds. The CDC "surveillance" criteria that most doctors refer to was never intended to be used for diagnostic purposes but for research. Unless a doctor has had specific Lyme training it may be very difficult for them to spot Lyme except in the most obvious cases. IMO and respectfully, the PANDAS doctors including Dr. T. should be more careful in how they test and what they tell patients about Lyme, and probably should just refer out if there is any suspicion. Because if your child does have Lyme you could waste years with treatments that are not fully effective. As well, not every PANDAS child has Lyme. In any case it is good to rule it in or out with a qualified physician. In my DD's case, who has +Lyme, +PANDAS and +Myco, her physical Lyme/co infections symptoms have been: extreme lethargy, joint pain (single sided and transitory) neuropathy (limbs fall asleep), blurry vision, stomach pain, headache and dizziness. Her OCD was pretty clearly PANDAS as it resolved almost immediately with abx, as did much of the extreme anxiety. We have some residual psych stuff thats hard to discern what is what, rages, situational anxiety, saddness, non existent self esteem, perfectionism, etc I call it collateral damage. I hope hearing about these symptoms can help you figure out what you are dealing with.

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MycoP can be transmitted by ticks but it is also a very common air borne bacteria that is all over the place. It is opportunistic in that it can show up when one has pneumonia but it can show up any time. Most people have had it, probably multiple times, but it becomes chronic when you can't clear it (just like strep or a lot of other things our autoimmune kids are susceptible to for whatever reason). IgG levels indicate an older infection (those are memory antibodies that show exposure, not always a current issue) IgM mean its a current infection. IgG can also mean a chronic issue - It's really dependent on if there are symptoms of it or not. Treatment for mycoP is generally Zithromax but if there is a chronic infection that is stubborn it is sometimes treated with multiple rounds of different abx. Keep in mind that with kids who have PANS, they have already turned that corner to having an autoimmune issue. You can be infection-free and still have the autoimmune issues. If MycoP igg levels are high, it could be that it triggered things but not nessesarily a current infection. You really need to look at the symptoms of MycoP and see if they apply and also check the labs to see if you are dealing with elevated IgG or IgM. Good luck!

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