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Ohh myco -P, Oh myco - P,


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Well, I FINALLY have something on PAPER that says my son HAS mycoplasma! And I can't wait to tell some of the docotrs and specialists that they should be testing, and retesting if warranted - kids with pandas that don't just have a clear cut case of strep for mycoP.

 

Here's the scoop - we tested for this over a year ago (just did it because he didn't ever have strep history, and I had read myco could be cause of pandas - so I asked to have it tested).

 

He had NO mycoplasma symptoms at the time of testing. Just pandas, and a recollection on my part that he had had a long lasting, dry (almost croup-like) cough about a year before.

 

IGM - this is the number that tells you if you have an active infection - was negative.

IGG - this number tells you have HAD mycoplasma. But, there is a range for it. Under 320 is normal for our lab's range. His was 2450.

 

I researched this and talked to many doctors.They were approx. split - our Stanford immunologist said it meant that he HAD mycpP and had a very robust reaction to it and makes a strong antibody response. (and that is what you will find in the literature). A researcher that is considered an mycoplasma expert because he discoved that is what was behing gulf war syndrome, said to him it probably meant it was chronic. These are just two - the lyme doc said could be chronic, regular docs (including Dr K) said it meant nothing.

 

What DOES mean something is if it goes up or down over time.

Between the fact that IVIG would mess up his numbers, needle phobia, my exhaustion from tests, and the fact that when he switched to Doxycycline he had a sun reaction (this is best antibiotic for mycoP) I decided to not test him for a while and stay the course with seeing how the 2nd IVIG was and continue with azithromycin and occasionally trying some different supplements like NAC.

 

HIs Mycoplasma number is now 2984. Up 534 points. I am sooo thankful I had him tested again. I had to ask for this. Thank goodness I did.

 

He's been doing fairly well - around 80-90%. but still has a very disturbing OCD thing, and anxiety that sometimes cause nighttime issues, since his 2nd IVIG. He's stable at 80% or so, at the moment, but has not made any improvements since about 4 months after his last IVIG (in April - BUT, and this is a big BUT he has not had ANY illnesses - thank you IVIG- and I think that is why he has not slid backward during this time).

 

I have my son seeing a Lyme doctor in case he has Lyme. His test results aren't very conclusive, and his only symptoms of Lyme is pandas. I'm really glad I stuck this out - weather or not he has Lyme I dunno - but he HAS mycpoplasma for sure, and the LLMDs know all the infections and antibitoics like the back of their hands - so its the best place for you if you think there might be some underlying infection.

 

I cannot WAIT to start him on antibiotics for mycoplasma. The sun is gone for the next few months...yay!

Edited by norcalmom
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norcalmom,

Good for you and your son! My daughter who was being treated with Augmentin 1000 xr was doing very well, most of the OCD along with other symptoms disappeared. She still had some lingering OCD though and it was not till we added Biaxin to the mix that the final OCD left.

 

She never had any high strep titers or strep symptoms, but her mycoplasma IGG was high on the lab test. (different scale then yours but high) Her Igm was negative.

 

I had written to that doctor you speak about with the gulf war syndrome he did say that Igg should be treated, he was careful not to say what I should do but that positive Igg and negative Igm he would treat.

 

We had it tested only one other time the number had dropped a bit, but was still in the high range, she had been on augmentin but not the biaxin at that time if I remember correctly, we never did check it again. I think I had written some place in here about it when we were trying to figure out whether to treat or not.

 

Hope the new antibiotics do if for your son! It really made all the difference for her!

 

Kay

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We had myco-p, but 3 different antibiotics did nothing. myco numbers kept increasing with each antibiotic. Dr B said Bioxin usually does the trick but not for our ds. Dr B switched him to Minocycline and that finally brought his numbers down. Each person responds differently, I guess. Best if wishes. Linda

Edited by 3boysmom
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I am being treated for chronic myco P. My doctor started me out on Minocin 50mg, M-W-F. The pain and stiffness in my hands and other joints slowly disappeared. About 5-6 wks after the initial dose, he upped it to 100mg M-W-F. I am herxing. I have good days and bad. The bad days I am so fatigued I just want to lie down in bed and do nothing. I just had an appt today w/ my dr and he says this is a good sign and its working. He will add azith 1x week in a couple of months. He does not want my herxing to get any worse.

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2 years of on going Azith 500mg/day

Down from 0ver 200 to 39 (35 is the border here) in 6 months, first noticed 50% drop at 3 months but ease of symptoms from the start in very small portions, but still going on! + NAC, Glycine, B-vit, multivit, Omega3, lots of love and support and encouragement for cognitive and behavioral improvement and doing our best to make the setbacks and bad things a matter to handle or challenge or simply let them go by. It helps a good deal, both her and us.

 

This requires a lot of patience!

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I am so happy to hear that there are Drs that do believe that there may be a connection with myco p and pandas symptoms. We are waiting for our first appt with Dr. B in Feb. The only thing that came up on my son's labs were high IgG but IgM was normal. Pediatrician says its ONLY a past infection though he has a chronic croup like cough for years.

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scossio - you need to test again to see if the number is going up or down a month or two after the first blood draw if the IgG is out of range - regardless of the IGM. IgM only goes up at the beginning of the infection (or on the first infection or two - after that they don't make the IGM anymore) so the only way to tell if you have had it for a while is to see which way the IgG is trending.

 

My son was on 500mg of Azith for the past 2 years. (fairly consistnetly). Although like most, he did well for first few months, it seemed to no longer work for pandas but I kept him on for prophylactic/immuno modulation/anti-inflamatory purposes.

 

From what I have read, Doxycycline is the antibiotic of choice for myco P, but others are sometimes used as well.. There are several strains of mycoplasma, and they perhaps determine the best antibitoic. Obvious the Azith wasn't working for DS.

 

Our doc has him on Doxycycline - 150 2x per day (he weighs 125) and the literatrue I've read says the does would be between 200-300 total for an adult.

 

He is also taking something called "A-Myco" which is an herbal tincture you can buy over counter. I don't know much about that- will post if I learn more. I bought it there in the office, and they told me to increase from 1 drop 2X/Day to 7 Drops 2x/day very slowly.

 

 

Here is an excellent summary of mycoplasma, its on a morgellons website, but its a good overview and has treatment recommendations and other considerations..

 

http://www.morgellons-uk.net/?p=467

 

Best of luck to all!

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Hi Norcalmom, did you let Margo T. know about your mycoplasma situation?

 

I asked our ped to test for mycoplasma a while back and she wouldn't even do it b/c dd was on Azith...obviously I need to put my foot down and get it done. (She's on 250mg/day but weighs less than your son.) So both IgG and IgM and then repeat in 2 mo (assuming the first set wasn't rock bottom low)?

 

Symptomwise, we are is pretty good, but not 100%. She still has some anxiety and an annoying doorway ocd (based on fear of getting fat). She also had a mild verbal tic (which is fading) which started when her sister was sick for a week with a viral fever this fall.

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I did tell Dr Margo and Dr. sean Mc G. about the test results. Margo emailed me right back. I bet she would write the script to get tested.

 

My son's Cam K after IVIG only went down to 131, which was weird. And although he got better - he didn't get all the way better. I think the IVIG has helped him not get colds and viruses - and gotten him to about 80-90% (but this is all relative - one person's 90% is anothers 20%!) He had/has many, many pandas symptoms in exacerbation.

 

I am beginning to think more of pandas as a BBB disease. IF there is something that can keep the BBB open - like an infection - then they overproduce the autoantibodies becasue there is a constant feedback loop of positive reinforcement. Adrenaline can also keep it open - and that is what they give the mice in the studies to get them to reactive to the autoanibodies. When I heard that at the symposium in TX a lightbulb went on for me. Mycoplasma is so small it can cross the BBB too - so more reason if your child is not recovering fully from IVIG to investigate that one.

 

I know that someone previously posted that Dr Swedo or Cunningham said that the BBB might open due to a traumatic event or infection, but they said it it would then close. I see no reason for it to close in our kids - since they are in states of producing massive amounts of adrenaline because they are in a constant state of flight/fight and anxiety. The BBB opens up (due to traumatic event, or infection) when the the kid has a strep infection (and are therefore already producing more autoantibodies - this per cunningham - strep alone without pandas raises the camK to 135 (median) from 90) the autoantibodies get through the BBB and attack the center of the brain responsible for flight/fight/anxiety - and the kid kicks our more adrenaline, and the immune system sends back message to make more anti-lysoganglioside (or whichever) because it found that antigen - our kids brain...and there's no way out of the cycle.

 

So - while I believe fully in pandas and the autoantibodies - I think in kids where the IVIG does not take care of it - then they must still have some sort of infection. Something is keeping the BBB open. And once the immune system has sensed that autoantibodies are an appropriate response (their first pandas episode ) - they are more likely to overproduce these when our kids get sick. That's why they exacerbation due to viruses. Just my 2 cents.

 

IgM only stays elevated in the beginning - so I'd assume anyone with chronic myco P wouldn't have IgM. If the IgG is elevated above the normal range (for our lab that is 300) than you should test again in about 4 week to see if it is trending up or down. Use the same lab.

 

Good luck! I met your DH in TX ans saw pic of your beautiful daughter! As I recall our kids have a few other things in common when it comes to tests - like low ferretin, lowish IGG, and I think your daughter also didn't go all the way back to normal on the Cam K test post IVIG?

 

I don't know where you stand on the whole great lyme debate, but regardless of where you stand - those docs will test the heck out of you and give you antibiotics appropriate for whatever they find. I don't even 100% buy into that my DS has lyme - they think he does, I'm just not sure. They were however the only local drs that thought that the high IgG for myco P was an indicator that he probably had myco P. All the other docs said it meant nothing.

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Norcalmom - thanks for sharing that link - it's a great one.

 

FWIW.....my DS has had elevated IgM and IgG for over a year now. (15 months that we know of). IgM can stay elevated for long periods of time as well.

 

I agree though, in that if there is elevated IgG only, to definitely keep an eye on it.

 

The article norcalmom posted does a good job of explaining that even negative test results, don't necessarily mean negative.

 

Quote from site

"Clinical Testing for Mycoplasmal Infections

 

Until recently one of the most difficult problems in detecting mycoplasmal infections was that the available techniques, serological and culturing procedures, were relatively insensitive for detecting intracellular infections. Mycoplasma culture techniques can be highly specific for detection of some mycoplasmal infections, but they are relatively insensitive because of difficulty culturing various Mycoplasma species. Conventional serological detection of mycoplasmal infections is quite difficult due to the lack of humoral immune responses in most patients. Also, detection methods that use antibodies against mycoplasma antigens are not very reliable, because mycoplasmas are able to hide inside cells. This can result in rather normal antibody titers during active mycoplasmal infections. "

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I guess we were lucky that he did have anitbody response so it was caught. His only symptom was the non-productive longish- lasting cough that he had two or three times in the past 2 years - an maybe a low grade fever, but in terms of childhood colds - it was minor, somethng you wouldn't normally bring kid to doctor for. I recall bringing him in to have him swabbed for strep at his second exacerbation - due to this type of cough - the doc said it was just a virus, no strep and no typical pneumonia. (they listed to chest).

 

There is also PCR testing. But in absence of symptoms, its hard to say how far to take testing and which ones to do. I think since myco P is a know pandas cause, if your child does not recover fully with IVIG - or even before IVIG - then it is worth investigating.

 

Thanks for pointing out that th eIgM can also stay elevated. I didn't know that, just read that it typically falls and the IgG stays up.

 

What are you doing for treatment New Beginnings? She's been positive for over 15 months.. I'm sorry to hear that. I have been reading how hard myco P can be to get rid of. Please let me know what you have tried.

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Myco P can be extremely hard to get rid of and I think it's often overlooked.

 

DS's numbers are dropping every time we test him, but they are still above normal. (both IgG and IgM) I just wanted to point out to others that it can take a very very long time to get rid of and it's a bumpy road along the way. Symptoms really blew up the first 3 months and then flared every 6 weeks - you could mark your calendar for it. It WILL get better though - as those numbers started to fall, the symptoms began to improve.

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Also, detection methods that use antibodies against mycoplasma antigens are not very reliable, because mycoplasmas are able to hide inside cells. This can result in rather normal antibody titers during active mycoplasmal infections. "

 

Ughh...that's my fear if we do get tested, esp. considering dd's strep titers were always really low (even with positive cultures!).

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I did tell Dr Margo and Dr. sean Mc G. about the test results. Margo emailed me right back. I bet she would write the script to get tested.

 

My son's Cam K after IVIG only went down to 131, which was weird. And although he got better - he didn't get all the way better. I think the IVIG has helped him not get colds and viruses - and gotten him to about 80-90% (but this is all relative - one person's 90% is anothers 20%!) He had/has many, many pandas symptoms in exacerbation.

 

I am beginning to think more of pandas as a BBB disease. IF there is something that can keep the BBB open - like an infection - then they overproduce the autoantibodies becasue there is a constant feedback loop of positive reinforcement. Adrenaline can also keep it open - and that is what they give the mice in the studies to get them to reactive to the autoanibodies. When I heard that at the symposium in TX a lightbulb went on for me. Mycoplasma is so small it can cross the BBB too - so more reason if your child is not recovering fully from IVIG to investigate that one.

 

I know that someone previously posted that Dr Swedo or Cunningham said that the BBB might open due to a traumatic event or infection, but they said it it would then close. I see no reason for it to close in our kids - since they are in states of producing massive amounts of adrenaline because they are in a constant state of flight/fight and anxiety. The BBB opens up (due to traumatic event, or infection) when the the kid has a strep infection (and are therefore already producing more autoantibodies - this per cunningham - strep alone without pandas raises the camK to 135 (median) from 90) the autoantibodies get through the BBB and attack the center of the brain responsible for flight/fight/anxiety - and the kid kicks our more adrenaline, and the immune system sends back message to make more anti-lysoganglioside (or whichever) because it found that antigen - our kids brain...and there's no way out of the cycle.

 

So - while I believe fully in pandas and the autoantibodies - I think in kids where the IVIG does not take care of it - then they must still have some sort of infection. Something is keeping the BBB open. And once the immune system has sensed that autoantibodies are an appropriate response (their first pandas episode ) - they are more likely to overproduce these when our kids get sick. That's why they exacerbation due to viruses. Just my 2 cents.

 

IgM only stays elevated in the beginning - so I'd assume anyone with chronic myco P wouldn't have IgM. If the IgG is elevated above the normal range (for our lab that is 300) than you should test again in about 4 week to see if it is trending up or down. Use the same lab.

 

Good luck! I met your DH in TX ans saw pic of your beautiful daughter! As I recall our kids have a few other things in common when it comes to tests - like low ferretin, lowish IGG, and I think your daughter also didn't go all the way back to normal on the Cam K test post IVIG?

 

I don't know where you stand on the whole great lyme debate, but regardless of where you stand - those docs will test the heck out of you and give you antibiotics appropriate for whatever they find. I don't even 100% buy into that my DS has lyme - they think he does, I'm just not sure. They were however the only local drs that thought that the high IgG for myco P was an indicator that he probably had myco P. All the other docs said it meant nothing.

 

Hmmm. I have to look up what her values were. When we tested her after her 1st IVIG her cam went down quite a bit, close to normal (esp. considering she was in the high SC range). However, I think we tested her too soon after IVIG, so I'm not sure how valid that number would be. When we tested her later, I think she was in the 130's.

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