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Mycoplasma IVIG


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15 replies to this topic

#1 LaurenK

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Posted 03 January 2012 - 01:47 PM

Ughh now we find my son also has mycoplasma IgM elevated. Would IVIG still work in this case?


#2 911rn

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Posted 03 January 2012 - 04:17 PM

Ughh now we find my son also has mycoplasma IgM elevated. Would IVIG still work in this case?


If you have elevated IgM- means he has active Mycoplasma infection, right? Most commonly associated with "walking pneumonia." Is your child sick?Anything indicative of infection- fever, elevated WBC etc? Why would antibiotics not be used to treat that- that is the usual treat for Pneumonia. Usually use Zithromax or a non Penicillin type antibiotic for this. I'm just not sure why IVIG would be the first choice for something typically treated with antibiotics??? If child is not sick- I think I would want to go to Infectious Disease doc with this type result for options. Just a thought.

#3 dedee

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Posted 03 January 2012 - 05:55 PM

Hi Lauren,

I have 3 PANS children. One is reactive only to strep and the other two we discovered this past year were positive for Myco p. Both of the younger ones have had pneumonia in the past but were not showing any signs of active respiratory infection at the time we got the positive titers. We had both elevated IgG and IgM titers. I am sure you will do your homework and read plenty on myco p. but the basic is that it is a very difficult bug to get rid of because of it's ability to "hide out" in a somewhat dormant phase and replacate. Some physicians refer to it as a cross between a virus and a bacteria. Myco may take many months or sometimes up to two years to clear completely. Some children will have Mycoplasma and never have neuropsych symptoms. Other children, such as ours, are triggered by the mycoplasma causing an autoimmune reaction and the chain reaction that occurs with PANS children. The IVIG is not given to treat the bacterial infection. It is given to stop the autoimmune reaction and the inflammatory reaction(in the brain) that causes the neuropsychiatric symptoms. Also, it helps strengthen the immune system and (hopefully) decreasing future flares or a least the severity. However, IVIG will not be effective if the infectious process has not been addressed. So it is important to get a good grip on finding the appropriate antibiotic that will work for your child. Seems that every child reacts differently. There are many different species of mycoplasma bacteria. Therefore different children will react differently to treatment depending on which species they are infected with. Testing to differentiate myco species is very expensive and not normally done as part of the treatment. They start with the most common antibiotic and treat by results. We started with Zithromax and saw little effect after one month, so we switched to Biaxin and saw huge improvement in days. The improvement halted after a while and so we switched to Erythramycin. It is important to see a physician who has experience treating mycoplasma. Our current provider believes we still have residual inflammation and we are going to do a round of IV clindamycin with oral Minocycline starting next week. Minocycline is also a good antibiotic for myco because it is an antinflammatory and also opens the blood brain barrier. Some doctors use it in combination with Zitromax or another antibiotic.

I know you are upset that you have this to deal with but it is better to know who the enemy is so to speak so you can address it head on. Once you get the appropriate antibiotic I believe you will start to see great improvement. Best of luck.

Dedee

Mom to three PANS children: Son 18, Son 15, & Daughter 10. Oldest Son off antibiotics and doing well.  Middle Son being treated for Lyme and Myco P with antibiotics and supplements.  Daughter being treated for Lyme, Bartonella, & Anaplasma.  She has had 2 IVIG's, on antibiotics, supplements and working with methylation and CBT.  Starting with my oldest son, we have been fighting this battle for 12 years!


#4 eamom

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Posted 03 January 2012 - 09:45 PM

Ughh now we find my son also has mycoplasma IgM elevated. Would IVIG still work in this case?


Hi Lauren,
Here's another thread on Mycoplasma, don't know if you've seen it:
http://www.latitudes...showtopic=15792

#5 LaurenK

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Posted 04 January 2012 - 04:23 AM

but if the goal of IVIG is to sort of "reboot" the immune system wouldn't the chronic infection not matter all that much because you are rebooting?

#6 chase23

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Posted 04 January 2012 - 05:06 AM

Can I ask who you see for the mycoplasm and pandas. My daughter had had this pneumonia 3 times since she was 3 years old. trying to make a decision about who to take her to, someone well versed with mycoplasm would be the best

Hi Lauren,

I have 3 PANS children. One is reactive only to strep and the other two we discovered this past year were positive for Myco p. Both of the younger ones have had pneumonia in the past but were not showing any signs of active respiratory infection at the time we got the positive titers. We had both elevated IgG and IgM titers. I am sure you will do your homework and read plenty on myco p. but the basic is that it is a very difficult bug to get rid of because of it's ability to "hide out" in a somewhat dormant phase and replacate. Some physicians refer to it as a cross between a virus and a bacteria. Myco may take many months or sometimes up to two years to clear completely. Some children will have Mycoplasma and never have neuropsych symptoms. Other children, such as ours, are triggered by the mycoplasma causing an autoimmune reaction and the chain reaction that occurs with PANS children. The IVIG is not given to treat the bacterial infection. It is given to stop the autoimmune reaction and the inflammatory reaction(in the brain) that causes the neuropsychiatric symptoms. Also, it helps strengthen the immune system and (hopefully) decreasing future flares or a least the severity. However, IVIG will not be effective if the infectious process has not been addressed. So it is important to get a good grip on finding the appropriate antibiotic that will work for your child. Seems that every child reacts differently. There are many different species of mycoplasma bacteria. Therefore different children will react differently to treatment depending on which species they are infected with. Testing to differentiate myco species is very expensive and not normally done as part of the treatment. They start with the most common antibiotic and treat by results. We started with Zithromax and saw little effect after one month, so we switched to Biaxin and saw huge improvement in days. The improvement halted after a while and so we switched to Erythramycin. It is important to see a physician who has experience treating mycoplasma. Our current provider believes we still have residual inflammation and we are going to do a round of IV clindamycin with oral Minocycline starting next week. Minocycline is also a good antibiotic for myco because it is an antinflammatory and also opens the blood brain barrier. Some doctors use it in combination with Zitromax or another antibiotic.

I know you are upset that you have this to deal with but it is better to know who the enemy is so to speak so you can address it head on. Once you get the appropriate antibiotic I believe you will start to see great improvement. Best of luck.

Dedee



#7 powpow

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Posted 04 January 2012 - 06:11 AM

do not know if she is the best for myco p- but Dr L in MD does recognize myco p. as a trigger, from what I have seen/heard.

#8 tpotter

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Posted 04 January 2012 - 06:16 AM

[quote name='chase23' timestamp='1325671598' post='128339']
Can I ask who you see for the mycoplasm and pandas. My daughter had had this pneumonia 3 times since she was 3 years old. trying to make a decision about who to take her to, someone well versed with mycoplasm would be the best

[quote name='Dedee' timestamp='1325631323' post='128317']


I will answer this one, because I am also fighting mycoP (I've had it now for about 4 years, but was undiagnosed, although symptomatic for 3 years). I also passed it on to my children and DH (IGG's were/are very high.)

Our LLMD is the one treating the mycoP, because it is frequently a co-infection of Lyme. While searching for answers (which never seems to end,) we figured out that we were also dealing with lyme, bartonella, and other co-infections. Our LLMD is the only dr in our team (including a senior lung specialist at a notorious hospital) who really feels comfortable treating with drug cocktails, which is frequently needed for this. I am still under treatment, but have actually found that I've had several good days during this period. MycoP is very, very hard to completely eradicate.


Lauren, you also asked about rebooting the immune system with HD IVIG. Yes, it does that, which is why the kids do get somewhat better, but then get sick again within just a few weeks. If the infection is not gone, they are still fighting the infection. That being said, many of us who have gotten HD IVIG for our children while still tracking down and fighting ongoing infections, have found that our children are much better than they were prior to the IVIG. We were just discussing this the other day, as my DS16 was complaining that he is "no better than I was prior to getting PEX and IVIG." I pointed out that I haven't carried peanuts with me for the past year (since IVIG started), and that I wouldn't have gone anywhere without the peanuts (it was the only thing that would stop the rages, and it stopped them within minutes.) We got a good laugh out of that, because all of us remember the "peanuts." He still has rages, but he's able to get just enough control to get himself away from everyone, and then they calm down on their own (prior to that, he couldn't calm down for hours, unless he had his peanuts..) So, we did find that doing IVIG simultaneously has helped.

#9 LaurenK

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Posted 04 January 2012 - 06:35 AM

Thanks so much for your input tpotter. However, if IVIG does in fact reboot, so to say wouldn't it make the immune system no longer react to the mycoplasma in that way if you do IVIG enough times? Isn't the whole theory behind PANDAS a sort of resistant form of strep, but IVIG puts things into remission. Im quite lost with the whole idea of chronic infections.

Edited by LaurenK, 04 January 2012 - 06:36 AM.


#10 dedee

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Posted 04 January 2012 - 08:14 AM

My daughter also had several cases of pneumonia over a two year period. One winter she had it three times and the next winter twice. I approached my pediatrician and asked her didn't she think this was unusual since most "healthy" children don't get pneumonia like that. She basically blew me off and said as long as she improved with the antibiotics it was nothing to worry about. Wrong! It was only a few months later that my daughter had her huge exacerbation after a flu mist and was in a full blown PANS episode. Only after seeing Dr. Murphy in Florida (A PANS specialist) did we get mycoplasma titers and find that her IgG and IgM levels were through the roof even though she wasn't showing any signs of a respiratory infection at that time. As long as the infection is present, the body will continue to react and produce antibodies that cross the blood brain barrier and cause the inflammation. You can do IVIG to "reset" but the "new and improved immune system" will still produce antibodies because there is still infection present in the body. You must clear the body of infection with antibiotics (or at least for the most part)before attempting to halt the autoimmune response.

There are several PANS specialist who can help you with Myco p. I know that Dr. B has worked with others who have had myco and other co-infections before and as another post said, most all LLMD's are great with Myco because it is a frequent co-infection with Lyme. It's the main stream physicians that are mostly ignorant. Even after we got my daughter's titers back, her pediatrician wanted to give her 5 days of zith and that was all. That is laughable, since here we are nine months later still dealing with it. Thank goodness we have made progress during that time, but 5 day would have brought nothing. My advice is to make an appointment with a specialist and get on the internet and read as much as you can. I did a google search on Mycoplasma and neuropsychiatric disorders in children and read for days. You will feel empowered with the knowledge you gain.

Dedee

Edited by Dedee, 04 January 2012 - 08:35 AM.

Mom to three PANS children: Son 18, Son 15, & Daughter 10. Oldest Son off antibiotics and doing well.  Middle Son being treated for Lyme and Myco P with antibiotics and supplements.  Daughter being treated for Lyme, Bartonella, & Anaplasma.  She has had 2 IVIG's, on antibiotics, supplements and working with methylation and CBT.  Starting with my oldest son, we have been fighting this battle for 12 years!


#11 LaurenK

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Posted 04 January 2012 - 08:39 AM

I've heard that mycoplasma is near impossible to eradicate though, that essentially it always will stay at a dormant level? Is that what the goal should be, keeping it dormant? Can you just continue doing high dose IVIG's monthly indefinately?

#12 cobbiemommy

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Posted 04 January 2012 - 09:40 AM

The ivig will probably help, but you still need to treat the mycoplasma with the correct antibiotic. Minocycline seems to be the preferred treatment at pretty high doses for a long lenth of time.

#13 dedee

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Posted 04 January 2012 - 10:51 AM

Our Doctors feel certain we can get rid of the mycoplasma. My son's titers have come down to normal limits, although he does still have some symptoms. We have decided to leave him on the antibiotics for another 3 months to see if that will get rid of those remaining few things that are still there. We have seen 3 doctors about the myco and none have said we wouldn't be able to get rid of it. I realize it may take some time, but time is all I have right now anyway. As long as I have the right Doctor helping and I feel like we are moving in the right direction I am happy. It's those times when we get stuck and the progress stops that I start to worry. Don't let yourself get too hung up on all the "what if's". Take it one step at a time. First step is find the right Doctor and get antibiotics. So making your appointment now with a PANDAS specialist should be your priority. Don't wait, start researching and make your decision today on who you want to see. Chances are you may have to wait a bit to get in. He or She will lead you from there.

Dedee

Mom to three PANS children: Son 18, Son 15, & Daughter 10. Oldest Son off antibiotics and doing well.  Middle Son being treated for Lyme and Myco P with antibiotics and supplements.  Daughter being treated for Lyme, Bartonella, & Anaplasma.  She has had 2 IVIG's, on antibiotics, supplements and working with methylation and CBT.  Starting with my oldest son, we have been fighting this battle for 12 years!


#14 tpotter

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Posted 04 January 2012 - 11:05 AM

My daughter also had several cases of pneumonia over a two year period. One winter she had it three times and the next winter twice. I approached my pediatrician and asked her didn't she think this was unusual since most "healthy" children don't get pneumonia like that. She basically blew me off and said as long as she improved with the antibiotics it was nothing to worry about. Wrong! It was only a few months later that my daughter had her huge exacerbation after a flu mist and was in a full blown PANS episode. Only after seeing Dr. Murphy in Florida (A PANS specialist) did we get mycoplasma titers and find that her IgG and IgM levels were through the roof even though she wasn't showing any signs of a respiratory infection at that time. As long as the infection is present, the body will continue to react and produce antibodies that cross the blood brain barrier and cause the inflammation. You can do IVIG to "reset" but the "new and improved immune system" will still produce antibodies because there is still infection present in the body. You must clear the body of infection with antibiotics (or at least for the most part)before attempting to halt the autoimmune response.

There are several PANS specialist who can help you with Myco p. I know that Dr. B has worked with others who have had myco and other co-infections before and as another post said, most all LLMD's are great with Myco because it is a frequent co-infection with Lyme. It's the main stream physicians that are mostly ignorant. Even after we got my daughter's titers back, her pediatrician wanted to give her 5 days of zith and that was all. That is laughable, since here we are nine months later still dealing with it. Thank goodness we have made progress during that time, but 5 day would have brought nothing. My advice is to make an appointment with a specialist and get on the internet and read as much as you can. I did a google search on Mycoplasma and neuropsychiatric disorders in children and read for days. You will feel empowered with the knowledge you gain.

Dedee



Dr. B. diagnoses it (that's how we found out I had it), but he only treats for a limited amount of time. MycoP is not his specialty. That's another reason we went to LLMD for that tx (but we still use Dr. B. for IVIG and for following the immune system as a whole. Personally, we have a whole team of doctors now, which I have found necessary.

#15 norcalmom

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Posted 04 January 2012 - 11:08 AM

IVIG helped our sone tremendously, but if I had known about the myco P prior to the IVIG, I would have treated the myco P aggressively first, and then if needed done the IVIG. The IVIG will not remove or stop a chronic mycoplasma infection that I know of. It may take care of some minor infections, or boost your child's own immune system enough to do so.

the mechanism by which IVIG works is not fully understood. It works for some auto-immune illnesses, but not others. It is suppossed to be highly anit-inflamatory, so perhaps it is closing the blood brain barrier and our kids autoanitbodies stop finding themselves for long enough to stop making them in high amounts. No one knows.

My son had two HD IVIGs. He got much, much better from the first one. After it, he started to slide progressively back with every cold - and although he never got as bad as prior to the first IVIG (I didn't let it go that far) he was headed that way. After the second he imporved again, but not as much as the first (although, he wasn't as bad off). But he didn't keep improving, and I could tell something was still going on. He got about 80-90% better, but still had one OCD thing that is troubling for the whole family, as well as some other relatively minor pandas stuff.

That's when I found out his mycoplasma IgG titer went from 2450 to 2950 (normal under 300, IgM negative) - he had been on 500mg of Azithromycin the past two years -

This test result came in about a month ago. He' s now on Doxycycline, (same class of drug as minocycline - you can discuss with your doctor why you might want one over the other) and I am treating him for Lyme as well as the mycoplasma, even though his Lyme results aren't 100% definative (the tests stink). The truth is the LLMD's know their chronic infections, how to deal with abberant immune systems - which is one effect of have Lyme for a long time - and about mycoplasma because it is a common co-infection of Lyme.

So, treat the mycoP. Try to get rid of that infection, otherwise the IVIG, which can be very tough on a kid/family - our son had horrible side effects / vomitting and migrains for almost two weeks after. Not to mention I was a nervous wreck flying across the country to get this procedure. Maybe if I had the right diagnosis and antibiotics in the first place it would not have been needed. IVIG is not with out risks, and in our case I had to pay for the first one entirely on my own. Second one was covered because DS's new immunologist found enough wrong with his immune system that he could get it covered that way. You may need it anyway, but you need to treat the mycoP with the right antibitocs regardless.




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