LaurenK

Mycoplasma IVIG

18 posts in this topic

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

 

 

 

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now



  • Announcements

    • Administrator



      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator



      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010
  • Help us learn if blood type has a correlation with PANDAS/PANS   33 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


      • O +
      • O -
      • A +
      • A -
      • B +
      • B -
      • AB +
      • AB -
      • I Don't Know

    Please sign in or register to vote in this poll. View topic